This file updated November 2009
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Many years ago (1980s) I tried to do some medical research on another condition but was defeated as I have no medical knowledge. I spent some time at the Boldrewood Medical Library facility in Southampton but got nowhere really. The problem is you need a bit of medical knowledge to even start. This has all changed with the internet. In effect there is ,via the medical search engines such as Medline and OMIM ,what I call a reverse medical dictionary. By this I mean from starting with non medical or marginal medical terms or descriptions you can get to precise medical terminology; the reverse of a medical dictionary.
I would be interested in making contact with anyone familiar with the linked medical conditions :-dyschondrosteosis,mesomelic dwarfism and Madelung wrist deformity all a sub-set of the general group of skeletal dysplasias. I could find medical references on the net but nothing about the more sociological aspects of these conditions so have placed this page into the internet realm.
Some relevant keywords for researching Madelung are lucency, pyramidalization/pyramidalisation,triangularization/triangularisation.
For anyone of a sensitive nature all the listed references at the end of this file do not carry reference to some of the more gross deformations and fatal conditions that a keyword search on Medline and Omim medical search engines inevitably turn up. It would appear there was a flurry of publications in the 1960s and 70s and little since until the 90s when geneticists became intrigued.
Seven sets of examples of the family genetics ,first two taken from journal source 6 at the end of the file
Firstly for a patient with MWD only (no DCS) 3 generations of 21 related people were medically checked and she was the only one with MWD; her parents were without MWD and her 4 daughters showed no MWD. She was one of 11 siblings 6 male and 5 female ,none of the others with MWD. 2 of her non-affected sisters had 2 non-affected daughters each.
Secondly the family tree of 5 generations of someone diagnosed with DCS,Nf=Normal female,m=male,D=DCS,++ = union,-- = sibling, ? = not checked. Fourth generation affected male was the index patient who incidentally proved to be the first recorded case of male to male inheritance in 100 years of the literature on DCS. The 'trees' below are intended for a font with equal spaced letters if it is to be read correctly.
Nm Df
|++|
Df--Df--Dm--Nm--Dm Nf
|++|
Nm Df--Nm
|++|
Nf--Df--Dm--Nm
?++| |++?
Nf Df
The above would seem to be fairly representative of how DCS propagates. It
was not clear in this journal but my interpretation is that in this example
anyone diagnosed with DCS would have been someone only showing MWD as well cases
of DCS and cases of DCS + MWD. I have used generally in this file the
interpretation of DCS as being someone showing mesomelia as the defining trait
and that of MWD someone having an obvious wrist disorder but no obvious
mesomelic foreshortening of forearm or lower leg. Third example M=MWD only with no mesomelia. It is from one of this self help group with permission to publish but no identifying detail.
Q Z
Dm Nf
|++|
A B
Nf Mm--Df Nm
|++| |++|
A1 A2 B1 B2
Dm--Mf Mf--Mf
The genetics in the above family probably show meiotic recombination between PARs (pseudoautosomal regions) ie the
telomeric extremeties of both X and Y chromosomes.There are two possible explanations for the LWD / DCS to cause LWD in all the family members male and female with either normal stature/Madelung or short/DCS.
Possibility 1:
LWD starts in mother of children A and B (and not in the father). Then there is only a recombination necessary between X and Y of A to son A2.
Possibility 2:
If LWD started in father Q of children A and B, then there are two recombinations necessary:
If the Q had SHOX mutation in X-chromosome
once from Q to A
once from A to daughter A1
or
If Q had SHOX mutation in Y-chromosome
once from Q to B
once from A to daugther A1
Fourth example in Italy from reference 4
Nm Df
|++|
Nm Df--Df Nm
|++| |++|
Nf Nm--Nm--Nm--Nm
Fifth example from Poland from reference 2
Nf--Nf--Dm Nf
|++|
Nm Df--Nm--Nm--Nm
|++|
Nf Nm--Dm Nf
|++| |++|
Nm--Nm--Nf Nm--Df--Nm--Dm--Df-twins-Df
Sixth examples taken from 8 French families from reference 17
Circles - female, blocks - male,black - affected, open - unaffected
Seventh examples taken from 7 UK and Swiss families in reference 16
Close-up of Jimi Hendrix's right wrist with nobble of ulna marked with 4 red circles, his left wrist is probably more representive.
Another close-up ,head of Radius marked R and Ulna marked U with the "pivot" point of the wrist well set back and under the Ulna-head ,in shadow under the ulna rather than distally to the ulna-head. The line (green) of the small finger along the edge of the palm should normally line up with the head of the ulna. The normal hand position relative to the wrist should be more like the red line in otherwise the same bent down angle of the hand. Looking at the back of his palm the small finger side is dropped down relative to the thumb side; this is what I have termed the Madelung offset. Another illustrative pic of one hand at least
http://www.photographicimage.com/prodimg/RK-007-wm.jpg
Unfortunately (maybe consciously like a number of people with MWD) Jimi Hendrix not only usually wore long sleeves and wide wrist-bands but sometimes frilly cuffs.. Pictures taken from the Caesar Glebbeck book mentioned above. Recently I saw a piece of film/tape of Jimi performing Voodoo Chile in 1969 on BBC tv "The Lulu Show". At the very end he does his picking with the teeth routine and showed the ulna side of his right wrist spectacularly well. I would estimate the unforced Madelung offset to be more that 30mm. His left wrist had his usual wide wrist "bracelet" marked with a red "B". I recorded onto video tape and photographed off the tv screen and scanned in . This low resolution version is the best I can do at the moment from the black and white TV image. His right elbow is at the left hand bottom corner of the TV screen and left forearm and hand at the right of the picture.
The serious joggle between the overlaid red circles is the unmistakable offset. The view is taken from underneath his vertical forearm (shadow showing the ulna)and the underside of his guitar, the fingers of his right arm at the white neck of the guitar. At this angle you would normally be looking at the edge of someone's right hand and perhaps palm but because of the Madelung offset you see the top of his hand and knuckles, his thumb would be around the neck of the guitar. Video now on youtube 3m 48 seconds into the 4 minute clip.
Jimi Hendrix - Voodoo Chile live
And a comment by email to someone in this group from Prof. Peter Scambler (author to reference 15 below ), Molecular Medicine Unit, Institute of Child Health, London, after seeing this file; "I had come across the idea that the late great Jimi Hendrix had Madelung, and that accounted for some of his ability with a guitar".
Looking at film of his father, Al Hendrix, he probably had Cubitus Valgus and also, reportedly, was born with six fingers on each hand. Looking at film of his purported brother, Leon Hendrix, I saw no semblance of DCS or MWD (as part of a decades long inheritance legal dispute there was a DNA profile check concerning whether they were brothers, but the results were withheld) .
Myspace profile by/of Jimi Hendrix's son
" Anyone who has ever met me in person had no doubt that I am his real son. (I even have a rare http://www.divdev.fsnet.co.uk/dysch.htm joint condition the same) "
Is this a world first, remote diagnosis of a very rare medical condition via picture evidence 30 years after death ? Of all the strange coincidences one of the people with MWD who has contacted this group had lived next door to Al Hendrix, neither knowing they may have had the same syndrome because of its different manifestations. JH invalided out of the military , according to which story you read, homosexual tendencies, parachute jump ankle or back injury, not injuries to wrists.
Note - You have to now subscribe to the archive of this newspaper
" The couple met in Beverly Hills at a lecture by Lord Burford on his pet theory that Edward de Vere, the 17th Earl of Oxford, was actually the author of the plays attributed to William Shakespeare. She said: "After we met, he started writing me 16-page letters that were just beautiful. I fell in love with his writing and he fell in love with my wrists, or so he says." "
His wife was an actress called Louise Robey. According to the Canadian Screen Guild she has appeared in 3 movies and a TV series.
1. Raw Deal with Arnold Schwarzenegger in 1986 (a small role).
2. The Money Pit with Tom Hanks in 1986 (named in the credits as title music composer rather than the non-speaking role).
3. Play Nice, in 1992.
4. Micki Foster in the TV version of Friday the 13th series in 1987 in which she was the leading lady.
I hired a copy of Raw Deal. Louise Robey (in the credits as Robey playing part "Lamanski's girl" ) has a one minute role playing a gangster's moll. She is robbed of jewelry in a stretch limo by Arnold Schwarzenegger 26 minutes, about 1/3 way, into the film. A close up shows Louise removing an earring. Her right wrist shows the protruding knobble of the ulna bone at the wrist that is a characteristic appearance of Madelung. Even if her wrist is the result of trauma rather than congenital Madelung Wrist Deformity or other anomaly it is useful to have moving film showing someone with the appearance of this deformity rather than medical research still photographs. The following is a picture of her with a posture adopted that would be typical of someone with MWD, rather a photogenic pic of the countess rather than a pic of me adopting the same pose.
or here, Picture of Louise Robey a less cluttered but mirror image version.
One of the most subtley enigmatic pics on the net. This picture shows someone in a pose that looks unnatural or uncomfortable or even impossible but is quite comfortable for someone with the non-painful form of MWD (see above reference to sitting on a dining chair). Note the forward prominence of her right ulna. I have asked friends with normal wrists if they notice anything odd about this picture and then asked them to strike-up this pose. Almost all of them thought there was something odd about her hands, that is right hand with fingers and palm touching thigh, fingers straight across, not at an angle, and arm straight at the elbow, two thought it was a computer manipulated image. They either could not adopt this pose or it was very uncomfortable and a strain. This otherwise awkward looking posture is very familiar to me in my own family and may even be another pointer or signature of MWD.
For people with LWD but not MWD it would seem there is a high probability of the following short 4th metacarpal and disappearing knuckles. 1) For the right hand to start with. Turn tips of all fingers under so that looking down at the hand you see back of hand and the first segments only of the fingers. The first metacarpal is your thumb and 5th is the small finger. The following is called Albright's sign. With a ruler join the farthest point of the observed 5th to similar point of the 4th .Then if normal fingers the ruler would pass outside of remaining fingers. With small 4th metacarpal the ruler would cross over the 3rd metacarpal. 2) curl round fingers further to make a fist. Again observing now just the back of the hand normally the knuckles would have a sinusoidal up and down profile. With Leri-Weill this ripple is often absent or much reduced.
Confirmed the following from the British Library copy of this book :- According to Adrian E. Flatt, The Care of Congenital Hand Anomalies (St Louis: The C. V. Mosby Co.,1977;page 50) 37 cases of congenital MWD in 1,476 patients with congenital hand malformations (1.7 per cent of general hand malformations) and 1 to 2 per cent of live births with hand malformations so about 1 in 4,000 of the general population of Iowa USA of the 1970s.
For comparison purposes the population in 1997 of USA was 260 million, Canada 29m,UK 58m,Holland 16m, Sweden 9m, Italy 57m, Australia 18m, New Zealand 4m. Tasmania 0.47m,Northern Ireland 1.6m,Norway 4.3m ,Chile 14m,Peru 23m,Israel 5.5m, Denmark 5.3m, Brazil 156m, Poland 39m ,Mexico 93m.
The following is not rigorous statistically but gives a flavour of the rarity. From replies (up to the revision date at the head of this file) to this group (principally), concerning just numbers of DCS and/or MWD affected and/or diagnosed persons including affected family members is :
Holland (22 people) would indicate less rare than 1 in 800,000.
N. Ireland (2 people) the rarity in the general population probably less than 1 in 750,000.
The most valid assessment due to the large proportion of internet users must be the USA, 189 people referred to on these files so rarity less than 1 in 1.45 million. Another possible interpretation for the USA rarity is it is a nation of much more ethnic diversity ie less inbred.
In the UK 114 people, so rarity less than 1 in 500,000 of the population
In Australia 31 people (plus the Sydney 12 ? ) so rarity less than 1 in 670,000 ( or perhaps 1 in 400,000 )
Canada 29 people, so rarity less than 1 in 1.2 million
New Zealand 5 people, so less than 1 in 1 million
12 people in Sweden so less than 1 in 800,000
8 in Denmark, so less than 1 in 650,000
3 in Israel so 1 in 1.8 million
1 in Norway
2 people in Chile
1 in Peru
1 in Poland
1 in Brazil
3 in Mexico
1 in Spain
NB the Dutch and N. Ireland figures include numbers from medical sources so there is perhaps justification for saying these are more valid figures. Then include the number of people totally unaware of the diagnosis and a figure of 1 in 100,000 looks likely. A point to be aware of ; of all the people making contact via this site not a single case of anyone ,knowingly, being related to anyone else in this group.
A few personal stories
The following personal stories would not have been possible but for the internet and global "whole text" search engines putting everyone in contact. About 132 people ( as of end of 2005 ), some isolated, and some with a familial genetic history so perhaps 400 or so people in total via family links. If anyone would like to contact the group please e-mail me ,my contact details are after the personal histories. No spam gets past me, the email addresses stay within the group and no names or email addresses released to the internet other than my own.
The blue markers remain in the same position for the next two images. It is not possible to conduct the N test as described above and photograph at the same time so have approximated by placing a small block under the ulna side of the palm and pushed the forearm down. This gives a minimum displacement of about 7mm
For the maximum displacement holding the fingers down on the flat surface and forcing the forearm upwards.
This shows a displacement of about 23mm. So from minimum to maximum a movement of 16mm. Actually doing the N test applying force directly over the displacement is more like 20mm.
Next you can test the upward movement by moving your hand, palm up,(and holding your arm still) up and down. Someone with a healthy wrist has a range of about 180 degrees (from down to up). Someone with Madelung hasn't, they have less than 180 degrees.
In the following list of people those marked [ CL ] are in the e-mail circulation list. I am the moderator / gatekeeper so no spam etc gets passed on. This is a closed group with no one's full name or e-mail address released except my own.
I am in 40s and can't honestly say my wrists are a problem and only doing this research did I realise I had a medically discernible condition. Although someone in my family was diagnosed in the 1960s with the more obvious DCS there was nothing to suggest then it was hereditary and no family genetic counselling . I never realised my wonkey wrists had the same genetic origin and being benign there was no need to seek medical advice . Writing wordy essays at school meant my wrists ached after a while perhaps this a contributory reason for me preferring maths and physics. "growing pains" leading to disturbed sleep may have been more than normal. As long as I lift heavy weights in an appropriate manner (lifting with the end of the forearm rather than my hand under the object) and don't subject them to shock loading ( eg not competing in tug-of-war and not pushing a car with stopped engine to bump start etc) .I have not had any problem in adulthood only once totally dislocating my wrist but jumping straight back again, when I was about 25. This was unloading a 50 Kg bag of fertilizer from a lorry, the plastic bag slipped and instead of letting it drop I tried grabbing it with one wrist at an awkward angle. As a teenager I broke my wrists on 3 separate occasions but it was dismissed as boys will be boys falling off things and an inherent weakness was never diagnosed. The 3 occasions were falling off a bike, getting forearm wedged under a child's playground swing and while crank starting an agricultural engine that backfired. All situations where anyone could have broken a wrist. The perplexed radiographer tryig to understand why my good wrist looked as broken in the x-rays as my broken wrist. I never broke a leg or arm it was only ever wrists. I have only self-diagnosed in the last few years (1998-1999). My GP (doctor) was most impressed he actually jumped out of his seat to manipulate my wrists: he had never seen or heard of the condition - I demonstrated MWD to him as I was about to leave his surgery having visited on another matter. Walking through doorways I often knocked this exposed area of the ulna against the door-frame also wearing a watch it had to lie on forearm above this knobble. If I get the angles and pressures just right using the other hand I can make the radius side of my right wrist sublux into the "bayonet " form. It springs back after releasing the pressure unlike the permanent bayonet form . I have always been cautious of handshakes. The origins for handshaking is as a sign of non-hostility because originally it meant your hand could not be on the hilt of your sword if it was clasping someone else's hand. Unfortunately too many people go to exaggerated shaking etc which for someone with MWD is aggravating. [Incidentally chinking of glasses has a similar origin. As a check against poison in someone's glass - the chinking in pewter type vessels guaranteed the contents of one cup would slurp into the other cup.]
Fifth digit clinodactyly to a minor degree. It is just possible that hearing anomalies are associated with DCS and MWD there are references to this in the journal articles eg ref. (50 below ). Someone else in my family had reduced hearing capacity from early middle age. I went the other way in teens and twenties I was susceptible to high frequency noise well above the normal hearing range ie technically between 15 KHertz and 40KHertz. In those days a lot of shops etc had ultrasonic intruder detector systems on their premises now superseded with PIR detectors. For technical reasons those ultrasonic systems had the transmitters active all the time and only the receivers switched off day time so I had to duck and dive to avoid them as they were usually placed at head height. MWD/DCS is an irregularity in bone development; hearing relies on the smallest bones in the body so there could well be a connection. Someone else in this group has separately experienced this phenomenom. Routine hospital hearing tests would seem to only go up to 8KHz which is nowhere near the ultrasonic range, so presumably the reference here is the only reference to it in association with DCS/LWD/MWD.
I would appear to have a fibula/knee anamoly, with either leg but right most prominent. Bend leg at knee then angle upwards the foot and twist the foot to direction of centre of body. The top of the fibula bone on the outside side of the body protrudes outwards. Another trait that seems to go along parallel with DCS is facial characteristic of wide nasal bridge ,ie the bony part of the nose rather than the fleshy part being wider than normal.
Pre-teen Jimi Hendrix
Both pictures show someone in short trousers with knees at different heights with one leg angled and each arm maybe different in length. The shoulders are canted perhaps 20 degrees off horizontal, twisted and bent limb bones and splayed feet all very rickets like. In all we look like we were assembled, cobbled together, on the Friday afternoon shift while drunk. By age 15 these asymmetric growth rates had balanced up to give an evenly balanced stance of 6ft 3in. There was just one long term effect - poor foot angle when walking, leading to fast wear of the outer rear edge of the heels of shoes. Also some clinodactyly in a couple of toes. fourth metacarpal, leading to overlap under the third, when pressured, in walking causing problems. Test results for myself:- N1L a displacement of about 8mm and N1R about 20mm P1L 150 degrees P1R 150 degrees P2L 80 degrees P2R 90 degrees
Well I've got dyschondrosteosis. It's also called Leri Weill syndrome. I'm in my 20s (in 2000, female)and one of my wrists has been operated. They've put a piece of my hipbone in it with a piece of metal on top with 7 screws in order to keep my wrist from moving cause it hurt to much. I live in Holland and there are 4 other families in Holland (each with 2 patients, I'm the only one in my family). I'm the first person with dyschondrosteosis in my family. . The dyschondrosteosis is most visible in my arms (wrists) and mildly in my legs. My left wrist is the worst and gave me a lot of pain. The pain was caused by the fact that my wrist was permanently dislocated and my muscles had to work very hard to keep everything together. Test results P1R 90 degrees P1L 20 degrees The doctors are very quick in diagnosing Madelung but they're not looking further. Madelung itself is not heriditary and it's easy to determine if someone has dyschondrosteosis with Madelung or that the Madelung is a birthdefect or caused by a accident. In most cases a simple X-ray of the legs is conclusive. If "A" wants to I can give her information, especially because we're practically the same age and I've had my wrist stiffened (arthrodeses).
Update Oct, 2005
Just a quick update on my own situation: they're going to remove the metal fusion plate from my left wrist on December 20th because it is causing zwelling and such and such.
This year (2000) I just discovered that I (female) have Madelung's Deformity. I have had trouble with both wrists ever since I can remember and I am anxious to write to someone with the same deformity. I am also in my forties. When I was a young child my wrists would become painful especially writeing, playing piano, knitting or typing. My mum just thought that I was saying that because I didn't want to do these things. I always had protruding wrists (outside area) so I knew then that my wrists were different than any one else. About twenty-six years ago when I was pregnant with my first child I starting experiencing numbness and tingling in both hands especially in bed at night or when I would hold something for a period of time (my left hand was the worst). I was told that this was common with some pregnancies with the extra water retention in my system. I had four children and had the same ailment throughout. Five years ago my Family doctor sent me to see a RHEUMATOLOGIST who said that I had Carpal Tunnel Syndrome and I had various tests done, was on different medications and had to wear wrist braces going to bed at night . Last year (1999) I experienced a lot of pain in my right wrist and the bone was protruding more than usual. I'm right-handed but I couldn't use my right hand as it was so painful and the pain shot down to my little finger and up to my elbow. I had to go to the hospital for some extensive testing and the doctor there told me that I didn't have Carpal Tunnel but he never told me what was wrong. I went back to the Rheumatologist and he told me that I had some kind of birth defect and left it at that. Meanwhile, I was in agony and sometimes cried with the pain so I went back to my Family doctor and he referred me to a ORTHOPAEDIC SURGEON. This Surgeon did a full history and testings before he would let me leave his office and was able to tell me straight away that I had Madelung's Deformity. He told me that it was very RARE and GENETIC and that he would only operate as the last resort as it was quite a big operation. He was more interested in getting the pain under control so I had a Cortisone shot which took a few weeks to take affect and also put me on an anti-inflammatory and pain killer called CELEBREX (what is mainly for arthritis which I don't have). The deformity affects the Ulna and Volar in both of my wrists although the deformity is now worse in my right wrist as the outer bone seems to have moved more towards the middle of the wrist and my hand tends to turn more to the right now. Test results P1L 110 degrees P1R 150 degrees
A couple of weeks ago (in 2000,female) I too was diagnoed with Madalung's deformity (aged 21). I was at the specialist at my local hospital when I found out. Luckly there were student doctors there so i was told a bit about the condition. But the only treatment i was told about was an operation which they won't do unless it gets much worse. so i went looking on the internet for some not medical treatments for the pain in my wrists and for some more information when i found your site. So what i am asking is, can you pass on any information that you recieve. and do you know of any treatments or things that i can do to make my live easier. All the information i have found on the net went over my head, there were lots of technical stuff that i didn't understand. The main thing that irritates me about madelung's is that my family doctor had never heard of it, let alone knew how to treat it. and the medical books she has had very little info in them. I was told I had MWD in July this year, I found out because the pain in my left wrist had never really left since spraining it aroud 4 years ago and then it proceeded to get worst since the begining of the year. The Dr at the local youth health center sent me for xrays basicly to make me happy because he couldn't see anything wrong but could see that I was in pain. After the xrays came back with a V dispalacement, he decided that I too would need to see an Ortho Dr. The younger doctors in the Ortho Department at the Hospital told me that there was no reason they could see for the pain and it was one of those things that I will have to live with. But they thought they would check with the old!!! Dr to see what he thought. The young Dr briefed the old one and as soon as he walked in said that I had this MWD. Because my local hospital is a teaching hospital, he went and explined it to me and the Student Doctors. He said the people with MWD are prone to sprains. To explain the way the deformity affects the wrist, He also said that I can play on the monkey bars, But never to do a hand stand, because this will make it worse. Now if i even knock my wrist I bandage it up over night or for a couple of days for protection so that it doesn't get any worse. Basically why go to the doctor and pay them to tell you to wrap it up and go easy on it.
I have Madelung's Deformity. I'm 46 years old and 5ft 10in I read some info and letters on your website. I've had trouble all my life with wrist pain, the worst in my late teens and early 20s and now again just recently in the last 6 months. I've used moist heat (hydroculator) , ice, anti-inflammatories and since April of 2000 I go to a massage therapist at least twice a month. The massage therapy has given me the most relief. I've played piano since age 8, concert organ and pipe organ since age 11, crochet, needle point, and do secretarial work for the last 13 years (writing this in 2000). I was tested for Carpal Tunnel in April 2000, which results were negative. The wrists braces the doctor gave me to wear while waiting for the test date actually made my wrists weaker. I wanted to write in case someone can benefit from my input. I was diagnosed with Madelung's Deformity only this last April. When I was growing up my parents and I just figured that I had weak wrists. My symptoms have included weakness in the wrists all my life, this last year - dropping things like jars of jelly, milk cartons etc. (have to use both hands to lift anything) , I've also had numerous wrist sprains since I was about 18 years old and a real bad spell where my wrists hurt non stop for about 2 years about age 19 - 20. I wear ace wraps off and on and when I played tennis even as a child, wore ace wraps. My wrists bones on both wrists stick way out.... thru my life many people have asked me, "Wow, did you break your wrist or something?" ------(by e-m i mentioned she probably had the "bayonet wrist" variant If someone looks at you side on when your standing up and arms down and palms facing backwards. The hands are stepped backwards from the line of the forearm (joggled) like the way a bayonet is fixed to a rifle off centre so the blade does not interfere with the path of a bullet.)------- Yes! That's exactly it. And I also can not straighten my arm at the elbow if my palm is flat against a wall at shoulder level {probably Cubitus Valgus}. I didn't mention that the hand specialist who diagnosed me in April wanted to do surgery. I told him that i'd rather live with it. I do go to a Massage Therapist every other week and she works my neck, upper back, arms and wrist real well. I've been taking Glucosamine Complex and I'll let you know if it helps. Was suggested to me by a friend who went to a holistic doctor. Also doing an exercise where you squeeze your thumb to fore finger and count to five and then squeeze your other fingers the same and then stretch out the whole hand and do the other hand the same. So far the theraputic massages every other week have helped the most and I can go for days now without any pain at all in one or both wrists.
While browsing the web I found your web page and I must say that its quite nice to see. I have Madelung's deformity and it can be quite painful, especially with repetitive movement such as writing, typing, etc. I would really like to get in contact with other people with the same condition. I have been to a wrist specialist who diagnosed my condition. Unfortunately, the treatment is basically "do whatever doesn't hurt." So I would really like to be in contact with other people with the same condition.
just found your address on web, what is your interest in madelung as i have suffered as long as i can remember with said deformity. i am female and i am 45
I (female) was happy to have found your website! I have two daughters and one son. My daughters are 11 and 12 1/2, they have both recently been diagnosed with Madelung's Deformity. They will be participating in a research study on Madelung's here close to home. Have you found anything else that is typically found to be wrong in someone with Madelung's Deformity? The Dr. believes the girls also have Leri-Weill Dyschondrosteosis, and that my husband has Leri-Weill also, although he doesn't have Madelung's Deformity. I would like to find out how rare this is, but they can't seem to give an answer. The Dr. doing the research said he believes it's much more common than people origially thought, but not able to give me any real numbers. Are you also short statured? My daughters are very short statured. Do you know if you have radial head displasia (RHD)? Both of my daughters have it. The Doctor said that all people with the radial head displasia typically have Madelung's Deformity, but not everyone with Madelung's has the RHD. I would love to hear from you. Followup Nov 2000
We were at the hospital again today, from E's fall a couple of weeks ago, for her to be checked again. Today they checked her legs, they said it is common for girls with this to have very big calves. E does, but my oldest, S, does not. They made a special brace for E as she has very large forearms and a normal brace off the shelf does not fit her right. I asked the Dr. what the chances are, if she has pain now at 11, what the odds are that she will have pain the rest of her life, he says no, but that doesn't seem to be the case from most of the others on the mailing list, I've met through your website. I don't want my girls to have to suffer with pain their whole life! I believe I already told you, but we are participating in two studies on MWD. Followup Sept 2001
Just thought I would update you all on my daughters and their Madelungs. S is doing well, not due to see the Dr. again till next year. She is starting to have pain when she does to much writing, she is 13. This scares me, as she has never had pain before and it is just now "developing". The doctors won't do anything for her, as she has what they call a "mild" or "less severe" case of Madelungs. E, had surgery on her left wrist in April. It is much more severe case of Madelungs. She had such severe pain before the surgery, and after had no pain whatsoever. We were so thrilled.....until 2 weeks ago when she started having severe pain in the same wrist (left) she had surgery on. She is already scheduled to have surgery on the right arm in October, but now we have to consider another surgery on the left. After her surgery in April she was in a long arm cast for 6 weeks, which wasn't to bad on her left arm, as she is right handed. When we get the right arm done she is very concerned about having that long arm cast on her right arm and not being able to use it. The doctors have even mentioned doing both arms in October, but we (my husband and I) are going to let them know that we want to get the left fixed then schedule the right. It also scares me that the doctors keep telling me that when their growth plate closes there is no reason to believe they will have any pain at all, but the letters I see from most of you says that you do have pain as you get older. The growth plate should close around 15 or so. I love the hospital here in -, they have been really great, and as I have told some of you, we participated in a study, that I believe is still ongoing in Philadelphia, PA, about Madelungs. We found out that it is genetic and that it usually affects that SHOX gene, which has some mutation.
Hi, My name is A. I am 24 and live in the US. I was just diagnosed (2000,female ) with Madelung's deformity and found your web site. I just wanted to tell you how informative it was, I wasn't able to find a whole lot of info online. I am a Registered Nurse and had never heard of Madelung's until I was sitting in the doctor's office with what I thought was a strained wrist. My left wrist is the most symptomatic, and it has bothered me since I can remember. I never thought anything about it though. I am dominant on my right, so left sided weakness never affected me until now. I am feeling very frustrated because my doctor told me I was going to have to live with the pain, that none of the available surgeries would benefit me. Of all things he thought wrist fusion may work later on, but for me that isn't an option. I have found most of my information from medical textbooks and professional journals, but I would be interested in any information that you may have. Thanks.
Hello, my name is C, .... i also have madelungs deformity. i had pain in my wrist since i was about 15 years old. but if i ever had pain before i think i just ignored it. but over a few years its became alot worse. im 18 now (in 2000,female), im getting surgery done on my arm/wrist. i go to the doctor in about a week to get a CT scan (cat scan) so that he can get a better look at my bones. then after that appointment i go in front of many doctors here in to see what the best kind of surgury for me would be. So i think this is actually a very good way of solving the problem. My mom also realized that she has it and so did her aunt. so it seems to be quite a problem in my family. Well i just thought that i would share my thoughts with you and my problem. i really like your website it had a lot of interesting information on there. thanks alot!!
I have a 15 year-old daughter (2000) who was recently diagnosed with Madelung's Deformity. It is in her right wrist and she is right-handed. The doctor has advised fusing her wrist. Has anyone had this done and do they have any regrets? I worry about the loss of motion in her wrist, but she is really wanting the surgery. I would feel better if I could hear from others who have had this done.
This morning (2000) we searched the web for information about Madelung's Deformity. We're very glad we've found your notes. Our daughter "A" (15 years old) is known to have Madelung's Deformity for about 1 year.The last few months the pain has become worse,for example at school she has trouble with carrying and lifting her books. Both wrists have the deformity,left gives most of the problems. Last year we visited a doctor(who made the diagnosis) and he told us that there were only 5 other people in Holland with the same problem. We have no idea how to go further and are looking for information that can help us along. Reading your pages we saw that you have (email) contact with " P in Holland". If possible we would like to make contact with him to gain information about the possibilities about treatment in Holland etc.So maybe you can give us his email address But also your other contacts have our attention. We feel free(if it's oke) to contact you again.Thank you for your attention,hope to hear from you soon. "A" is the only one known with the Madelung's Deformity in our family. About a year ago she started complaining about her wrists. We consulted a doctor(orthopaedist) in our local hospital. He made some X-rays and told us he'd never saw anything like it before. Unfortunately he only made X-rays of both wrists,so he didn't notice the curving of the radius.The next morning he called us and told us he'd found similar photo's in his book known as Madelung's deformity.He made an appointment for us with a professor called Mr. D. I think this will be the same professor P visited! He X-rayed the whole skeleton and gave us the diagnosis Dyschondrosteosis and Madelung wrist deformity."A" is only 1.55 meters tall. Her legs (tibia/fibula) are short in comparison with the rest of the body. He told us that no treatment was necessary at that point.At that time she had no pain and it lasted well for a whole time.At the moment the pain is becoming worse and she has difficulties at school carrying her bag as we already wrote. So we're looking for more information about possibilities and treatment.
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I (female) was actually diagnosed with this condition at the Lister Hospital in Stevenage some 20 years plus ago, after making enquiries about having this deformity corrected. At the time I was advised that the operation could cause me arthritis in later years and should not have the operation to correct my problem, therefore I still have the same deformity. Also, I am only 5ft tall and have slight bow legs. I am now a young 60 year old. The only problems I have had over the years is not having enough strength in my wrists to do certain actions, such as lifting, opening jars, bottles etc.,
I have Madelung's deformity, and am now 56. When I was 15 in 1966, a Doctor _ in Los Gatos, Calif. USA performed surgery on my worst one. Has worked good all my life. Now my right wrist bone has continued to grow and is now overwhelmed with arthritis. I saw an Orthopedic Doctor the other day because of the extreme pain, and because I've lost all control and movement of my little finger. They are now going to try and go in and cut off the ulnar bone an try to repair the damage to the tendon due to years of scrapping against the rough ulnar bone. So I am one of the early fixes, and the results of what happens in later years with Madelung's. I just wanted to include my story, so people know theirs hope for a normal life with surgery, and what happens later if you don't get it.
Hi, Im 18 and i have MWD. In my early teens i went to the NHS to see if they would operate but they weren't keen or very helpful towards my feelings and so wouldn't operate on me. Now that I'm 18 i still really want corrective surgery and thinking about going private. I was wondering if there is a specialist in the UK that has operated successfully and was wondering if i could talk to someone who has had the surgery to get there views on surgery. A few people in my family has MWD, my father has it and my auntie (my fathers sister) has it and also her daughter has it too (my cousin) but they don't like to talk to me about the condition either and i don't think they know much about the condition whereas i have been trying to research MWD.
Thank you for such an informative internet site. My sister pointed it out to me. I have Leri Weills with Madelung diagnosed at 15 and now am 49 with some wrist pain and weakness but nothing that has stopped me from doing whatever I wanted. There are 3 girls in the family with no past family history of this. One of my sister is also short and its always been questioned whether she too had this although she doesnt have the wrist deformity just shorter arms and legs. Her daughter (now 21) has it with severe Madelung deformity. I say that if my niece has it, her mother had to have it. My sister says no she doest have it just carries the gene and that all three of us sisters must have the gene, therefore all of our children carry the gene. My understanding is you have it or you dont (severe or not) and that we do not all carry the gene or pass that gene onto our children. So there is one sister who is not affected yet her children are worried about this and having children with this deformity. It was nice to see I am not so alone. When diagnosed there were about 30 cases known in the world. Its so odd to see so many pictues of it and to hear so many stories. I was always discouraged by the doctors about surgery and to just learn to live with it. And I have, just spend too much time covering up my deformed wrists as people are forever making comments about it. I find it very embarassing - even at my age. I have in the past seen a Geneticist at a clinic where I worked for years, in 1996 and he stated you must have the gene to pass it on but as I can see a lot of things have changed genetically in the past 12 years. Back then it was more prevalent in females, so I am surprised to see a few males in the mix now. I did make the rounds with my son, years ago, as I felt he may have it but we never did get a final diagnosis for him, it was questionable at around 12 years of age and now at 26 he does not have the madelung nor does he have a really short stature. I have one daughter that is not affected by it. The one niece I have with it I noticed it before she was even walking, something I could just see in her stature and the form of her arms. The whole thing is once again fascinating to me as it comes up again in life, so surprised this is more common then I thought
My 15 year old daughter was diagnosed with MD about 2 weeks ago. It was quite a relief actually, as we had been bringing up the progressive problems with her wrist to her primary care physician for more that 3 years now. Finally, we have a problem that can be addressed! No less than 3 pediatric doctors, a hematologist, and 3 sports medicine physicians have examined her wrist, and none have offered a viable diagnosis. We have an appointment with an orthopedist next Wednesday, and I am quite certain that he will immediately recommend surgery. The problem is, due to the fact that the condition is considered rare, I am not confident that a surgeon in our area will have had ANY (let alone sufficient) experience in the available procedures. I am extremely uncomfortable with the idea of potentially leaving her care in the hands of someone who wants to "experiment". I have emailed the only two hospitals in the US that actually mention the condition on their respective web sites, but I was wondering if anyone in your group could recommend a particular surgeon, or at least a place to start a search. On a side note, I did notice that it was mentioned somewhere within your web site that Madelung Deformity is congenital, and therefore can be passed on to your children. I just wanted to offer that "congenital" by definition means only that it is a condition which is present at birth, not necessarily that it was inherited. While it is true that MD can be symptomatic of some genetic disorders (and therefore be passed on to other generations), the condition alone is not necessarily an indication of such. I would like to thank you very much for the time and attention that it took to put together this very informative site. It is truly a blessing to have resources such as this when unfamiliar circumstances present themselves! D Tennessee
I saw your website a few years ago, when i first started going to the hospital to have my wrist looked at (broken wrist appearance, shooting pains, weakness and very low self confidence as a result!). After X rays, lots of doctors looking at me, and many tears later, I was told i had possible Madelungs. A few years on after having a small operation and having an increase in confidence, the weaknes/pains continue intermittently and i have to say at times i am pretty worried for the future as to how much this will effect exercise/general use of my wrist, and i decided the end of last year that perhaps joining/starting a self help group would be a good way forward...for me and others with the condition. I did a search and i see your site still exists and with some new entries from this year. When i search there seems to be conflicting evidence as to whether the condition is congenital/nutritional/trauma related, and there is no easy to use/even positive looking websites about it! I am 28 (born in 1979), female, was diagnosed when i was about 20, and no-one else in my family has any similar condition (that i am aware of). The bobble appearance, on my left arm, has shown since i was about 15, so i guess my bone fused around then...I had a year of being very unhappy with the way it looked at about 20 (although mine is only minor really, the lump and an arm about nearly an inch shorter than the other meant i still would not wear short sleeves for a long time), and i had intermittent shooting pains up my arm to about my elbow and pins and needles in my fingers, and would sometime drop things. After a few visits to _ hospital in Oxfordshire speaking with the hand specialist team, they were helpful in that they were interested to find out what it was (i had trainee doctors and other people looking at me as i was a rare case!) and they took X-rays and asked me how my legs were (i found out myself later thet MWD is associated with bow legs, but i do not have that). We discussed options for surgery but the doctors were not enthusiastic about doing anything because i did have full motion in my wrist (if not a slightly physically twisted version). Although the X-ray showed my metacarpals had fallen lower into the wrist joint because of the shortened bone, and motion was slightly different to what it should have been, i generally had good movement. The team were thus hesitant to do anything incase it caused further problems - the only option they came up with was to have fusion, but as said they thought it was a bad idea for my case. My sister asked half jokingly can they not shave the bump down a bit to see if helps/looks better - and they agreed. I was put on the waiting list and had the operation after a few months (i think i filled someone elses place because they said it may be a couple years). The bone was cut down a little and it was agreed beforehand that he would also do a denervation to try to stop the pains. As it happened the denervation was not done - i think he decided he wanted to take one step at a time, but he did say that whilst operating he had moved a nerve that was in the way...and since the operation i have had no shooting pains so perhaps that nerve was causing that! So i am now thankful for only the one scar and a denervation has not been mentioned since. So, since 2002 i have had weakness in my wrist (from the defect/operation), no shooting pains, movement pretty much the same, and intermittent pains around the wrist area and literally a couple of days ago it has been causing me grief and i can not lift a few things that i normally can (possibly why i checked this site again/maybe a docs appointment is needed). I was told that i would need to keep it moving/exercised to strengthen the wrist but otherwise they had no further advice other than to attend my 2 yearly appointments with them (once i had seen them a couple more times soon after the operation to check all was ok).
thanks the great website, it share so many good informations. I would like to ask you some question about Dyschondreoteosis. is D affect the ligament and regeneration of the ligament? specifiquely when there is a strain are the ligament able to repare itself or it is very slow to repaire. what about the collagen did it is an issue for D.did the collagen is affected I have a D with Madelung deformity both but the right side is more affected. but from what i read i seems to be mild form...i need to certify with a gneticien. I haved been injured at a left ankle ( 2 times ) and i walk on it following doc advice and i get a big inflammation and i can not put my leg and can not walk any more. if you have any information about collagen, and ligament please let me know. About me the problem is the diagnostic, I am not fully diagnostic whatever with radiology or genetics. And I need to do it to make sure. IT is in 2001 The radiologist said that I am the limited border between a syndrome or just a small stature with skeletal deformation.he did not know The orthopedics said nothing about it but it was _ years ago. The only geneticien in _ who meet me was really incompetent said that I had a mesomelic dysplasia ( It is the family class who include dyschondreotosis ) and probably D and it was crazy what he/she ask me.He/she wanted some x ray about my skeletal and I was _ pregnant.he/she write me a letter about the possible diagnostic and precise that I did not want to have an x ray because I was pregnant. i left and run this day. I still ask me why he/she did not do the test simply I was happy to do it at the time. It is why until now I was not really happy to be check out again whatever they are othopedic or geneticien. But I need to do it now. I am short stature 150 high, madelung deformity both arm, genou varum both side, the 5 finger short, short arm and leg, very small foot and hand. My right side is more affected than the left side. I have a hyperlaxite of the ligament. I went for surgery very young and it was for a confort purpose ( it was silly ) I had arthrosis related by too much sport and the second surgeon promise me I could do more sport. In the same time I get a first advice this guy try to dislocate my knee ( as I have Arthrosis and excessive pain) he wanted to prove me that I had hyperlaxite of the joint and the ligament and offer me 1 year of surgerie. He wanted to straight my legs, my ligament will be thighter and I will loose 2/3 centimeter. It called it osteotomie.and do both leg.I run this day very fast away from him. I was very active, doing a bit of sport at the time.I go for the first operation the surgeon just move the tendon of the knee. It works I never had any more artrossis hovewer the leg look for them more stable I find it less strong, now with the distance I will not do it. But it takes years to heal. It take a long time than normal . I had a lot of pain and it takes more than 2 years before I get better. I was 25 at the time.then I went to see a proffesseur orthopedic to get some advice.This guy advice me to be prudent and deal with my difference..and tell me that the operation I did was not used anymore because not efficient enough in term of result ( it was just one year later ). This guy gave me the best advice.but I did not get any diagnostic about D.it was 17 years ago from any of them. I understand also that in my condition I need to balance sport ( to gain mucscle ) and pain ( because of artrosis). The muscle help the ligament, the bone and it work together as an entity.I am being active all my life until now. But I was doing running, cycling, swimming but I give up skiing and other things to not damage the joint and save my mobility. I have wrist issue but it is not as bad and I do not carry any heavy things. But some times to times I have artrosis pain ( if I put pressure of the joint ). Now being injured, I can not walk because the crunches damage the joint of my shoulder, my hand.I need to be careful. About my family. It is curious. There is not diagnostic of DCS or MWd. Hovewer my father is short 160, with genou varum very affected.it is no sign of wrist problem.my mun was short 153 but no bones funny structure ( no madelung no genou varum ). My grand mother mother side was short 153 but no funny bones. Her husband was tall 175 no funny bones. My grand mother father was tall with very funny bones genou valgum no sign of wrist issues.my grandfather father very short genou varum but no wrist sign. My parent do not have brother or sister.my grandparent have brother and sister.but I am not close to them. My sister is very tall very funny bones structure.her arm form a x and leg genou valgum. I am not close to my family. Thanks for your help and I am happy to share my experience. Sorry to ask you about the collagen because I try to understand and you collect some much good information, I just wanted to ask you if you read about it in the common literature about DCS. But I am seeking some medical advice and see what they say.and try to understand my issue. congratulation for the website it is really helpful and info very ggood
I am 19 years old and have a fairly severe case of Madelungs Deformity. I was recently in an automobile accident and unfortunately was holding the steering wheel firmly as I was struck in the front end of my car. I ended up with a fracture of my 2nd metacarpal. My current job requires me to use computers (both typing as well as intricate use of the mouse). Before the accident I had problems doing this for 4 hours without a break, but now after the accident I am having to break every 30min and then after 2 hours I cant function anymore. When I was 18 the doctors told me I would have to eventually have my wrists fused but they assured me that it would be 30-40 years down the road. However the accident has sped this surgery up. The doctors are telling me I need a double wrist fusion. I need to know if you have had this or if you could give me any feedback on how this would effect a painters life. Thanks for having the site you do. I dont feel alone anymore. I have a cousin (who is a fraternal twin) who has Madelungs, and both my grandmother and my mother have some characteristics but neither of them have had to seek medical attention for it. My cousin on the other hand did have problems with hers but her problems didn't start until she was in her 20s and it was fixed with an osteotomy. I have the worst case of it in my family and have had problems with it since I was in 2nd grade. I underwent my first surgery when I was in 4th grade. As I previously stated my doctors have done all they can preceding the inevitable fusion and I am having a hard time dealing with it. I really need feedback about what its like.
I came across your web site when researching to find out why my left wrist hurts and the ulnar knobble is protruding (not sure of correct term but it's the outside wrist bump above top of left hand). A brief history: I'm 52 years young, 5'2" tall, petite but athletic frame. Until 3 years ago, I did aerobics and lifted weights for toning for 20 years. A couple years ago I mildly strained my left wrist and wore a wrist brace for a week or until it was better. Occasionally this would happen again and the strain would come back. A couple months ago, playing golf my left wrist began to hurt much worse. I get a pain on the outer side of my hand between my little finger and the ulnar knobble on my wrist. The pain is sporadic. What worried me is the left knobble (the bone on top of my wrist) at end of the ulnar is protruding much more and is farther back. My right ulnar knobble is also a bit higher than before but not farther back. I've had protruding ulnar knobbles but never as unusual until now. I thought it could be some form of arthritis, osteoporosis or ligament tear or from being in menopause but nothing matched up as close as MWD. Can MWD be unnoticeable and come on from an injury? I also notice now my left little finger is becoming a bit numb at times. I plan to see an orthopedic doctor when my insurance starts in 6 weeks but would appreciate any input on this. Can this become worse if not treated? I don't know of anyone in my family who has DSC or MWD or the appearance of it but my parents are divorced so I wasn't around my dad's side much. Although, I remember my fraternal great grandmother was under 5' feet tall. Not sure it matters but my dad's family is of Mexican and Portuguese decent. My mom's has some English, Cherokee Indian and German, I beleive. My dad is 6' and I'm 5'2" .... my mom is 5'3" and my maternal grandmother was 5'2". All I know is my left wrist is starting to hurt a bit more if I'm not careful with it and the knobble looks odd. Also, the right knobble is starting to look the same but not as high yet and I have no pain on the right. What worries me if this will continue to get worse if I don't get it treated?
I was diagnosed with Madulung's deformity when I was young, around the age of 8 years old. I live in _, Iowa (United States) and I am now 30 years old. My forearms are very short and curved, with a prominant wrist bone. It would be great to be updated on anything new with the disease and to get connected with others maybe even someone that lives nearby. I also have a question about genetics... is it always genetic? I don't know anyone else in my family that has it. So, I've always wondered that. Also, if I have children will they have it?
Hello, let me say how awsome it was to find your site! For years my husband and I have been gathering info about my condition, and in 20 minutes on your site we learned more than we could have ever compiled on our own! I am (was) an artist, and a freak accident 2 years ago left my already deformed wrist nearly useless. I have known of my condition since about the age of 11, thanks to a fall on the playground. At that time the doctors just refered to my MWD as a birth defect, no more info was ever given. From what I gather my MWD is severe in the right wrist, and very painful most of the time. I would be interested in adding pics of my affected arm to your site, if it would be helpful. Thank-you again for your site, it helps to know im not the only one!!!
I am particularly interested in the genetics behind Madelung's Deformity. Both of my parents are unaffected, but both my brother and I are. He has it unilaterlally, and I am bilateral. He tells me he's never really in pain, but my left wrist alternates between numbness and pain constantly. It just depends on the day. The main reason I am concerned with the genetic aspect of the deformity is my 2 year old son. He is already half my size (I'm 4'11" barely) but seems to have the odd shaped limbs like me and his uncle. My mother did remark that I was almost always small, but my brother was more normal in height until about 12. I guess what I am trying to ask is why did this disease pop up out of nowhere, or is someone in my family tree passing it down?
(I'm a 30yr old female average 5'4, 117lbs from the USA) I just came across your site last night by random googling and i was shocked to see that my "weird" wrist bones actually had a condition!!! and that I'm not the only one that has this odd "deformity". I quote deformity because my wrists have never given me any problems except for the ocasional stare or comment by people that notice that something isn't quite right. I'd like to send in some pictures to compare and contrast with others who think they might have the same condition as well.However, I have never been diagnosed by an actual M.D. with Madelung Deformity.. Perhaps because I've never had pain relating to my wrists..? i always thought they looked broken as if something happened and I was unaware! Or because I am thin they just stuck out more than the average persons... but that was me making myself feel better I suppose :) I saw crazy surgeries people have had to correct this deformity, and it blew my mind... I'm seriously hoping that no one decided to do that just based on the appearace of the bones but rather beacue extreme pain was a factor. Because by the look of the surgery it seemed even more painful!!!! So I've learned to live with the weirdness! ha
Hi, Im a 28 yr old female living in Sheffield, England and have the above condition. I have had this condition since birth and have had surgery (suarve kapanji) on both arms but my right arm is very bad. Im on loads of medication and have just been told that nothing else can be done for me. It has been suggested that I stop my part time job - as my arms are bad. I have been told that due to the nature of this condition I will get arthritis in both arms as I get older and will most likely not be able to use my arms in the future. I looking to be put in touch with other suffers of this condition. There is no one else within my family that has madelungs deformity. I am the only one with it. I know that when I was diagnosed when I was 10, it took them a further 2 yrs to put a name to it. I was also informed by medical professionals that its quite a rare condition and that only 6 others in England, Ireland and Scotland had it at that time. Still it was hard to find out any information on it and all the research was American. As I mentioned I have now been told that no other surgery will be done until I develop Arthritis (it is part of the condition, I am also only 5'2 and other members of my family are small - we found out that madelungs deformity is part of dwarfism - so it explained alot!!) and am left with severe pain in my right arm and moderate pain in my left arm, which Dr's are unsure on how to treat as most medications dont seem to relieve it.
followup Jan 2009
Hi just to let you know that Im being lined up for another operation to ease my pain, the Suarve Kapanji proceesure that I had done when I was 21 and 22 has failed and I have learned its a proceedure they wouldnt do today! Im unsure of what they are going to do but it involves taking every thing out of my wrist (all the metal pins etc) ans re-doing it and capping the ulnar bone as its rubbing on my Radius and casuing a groove and more pain. So far Im in splints for the day and night to limit movement as thats when the pain is at its worst. I have lost all grip in my right arm (which is my dominant arm) and have now progressed to being on Morphine to help with the pain as I have exhausted every other method there is.
Hi, I'm a 26 year old female from Glasgow, UK. I too have Madelungs, inherited from my dad. My dad has had 9 kids, and 5 have this condition. All those affected have gone on to have kids with the same condition.They are all quite short and stocky, where as I'm a bit taller than them and slim. I am now considering surgery, but I've been told by the Genetics Department at my local hospital that they can't find a surgeon who would be interested in operating. I've got 2 girls myself and although it doesn't look as though they're a ffected, I know myself that it might not show until they're about 7 years old. I just wonder how accurate figures really are as not all people are medically diagnosed. I assume most people self diagnose themselves as I did. As I mentioned before, my Dad's Dad had the condition. He was of short stature, and also had Madelung's. My dad is also short, about 5 foot, has short forearms and legs, and also has Madelung's. I'm one of twins (non-identical) and only I have inherited the condition. I don't seem to have inherited the trademark stocky build or very short legs, although I am only about 5 foot tall, I have Madelungs and my left arm is about 2 inches shorter than my right. I've also noticed that the Madelungs has become more pronounced as I've got older. My sisters have gone on to have children and they are not affected at all. The total number affected , 14 (5 males and 9 females). The figure could be higher as 2 of my neices have children who i've never met, so i don't know if they have the condition or not. I'm pleased that finally someone is collecting data on this, and hopefully the medical profession will one day take it seriously and carry out more research.
My dad's a P.A. and told me a couple years ago that I (male) have Madelung's. I have a protruding ulna (about 4mm more than normal), significantly less wrist strength than I should have proportional to hand and forearm strength, and I can touch both my wrists with my middle and rings fingers. I'm curious about that last bit-- nobody I know can come within a quarter-inch. I think my sister has Madelung's, and my brother is still too young for it to show up yet.
Hi ! thanks for your site, it's really interesting to read. When I (female) was growing up I thought I was the only person with this disorder. I am an adoptee, & was diagnosed at the age of ten with madelung syndrome, which caused signifigant pain in both wrists. I had reconstructive surgery on both wrists, which stabilised the wrist reducing pain, but also resulted in the loss of growth plates which has left me with even shorter arms than I should otherwise have... At the age of 12, worrieed by my short stature, my parents took me to the Adelaide childrens hospital, where after full skeletal x rays I was diagnosed with dischondrosteosis. There was some talk of possible bone lengthening surgurey for my very short legs, but we never pursued this. I have 3 children, a daughter & 2 sons, & my daughter has inherited the condition. Although in xrays she showed madelung deformity of the wrist at the age of 7, they have not caused her huge problems ( although she never crawled ).Following her xrays, blood samples were sent off for testing, & she showed the SHOX gene defect. I am half an inch under 5 ft, & always had a stocky build, paricularly in the arms, legs & buttocks. My upper arms always looked muscly, though they weren't! My daughter, at the age of 15, has surpassed me in height. She is about 5ft 2, & although she is not as affected as I am, she has the very thick calves, & her lower legs bow outward. I don't have this. I have since met my birth mother, who has short limbs, particularly the lower legs. She has never been tested. The rest of her family are all average height, although she had a grandmother on her Dad's side who has very short. Aparrently my father was short. She has a younger daughter who looks to me as though she might have the condition, with short arms & legs, long torso, & stocky build. I am the shortest of the lot. I am interested in the consaguinous theory to this disorder, which I seem to read on various sites. Does this suggest the disorder has an incestuous origin? If you can give me more info I would appreciate it.
I contacted you in 2006 for the first time. I was about 11 weeks pregnant and awaiting results of a CVS testing to rule out the possibility of having a child with ler-weill syndrome. I myself have LWD with the Madelungs defect,and i am about 4feet 10 inches tall. my husband is 5 foot 10 inches.our daughter is now 19 months old and does not have the defect. this was confirmed with the CVS ,she did not have the SHOX gene. however we are pregant again and this time genetics have found the shox gene in the baby. i am about 14 weeks pregnant and really upset about the findings. we know the baby is going to be a boy. i cannot find any information on the approximate expected height of males with the syndrome. is there any information that you are aware of regarding heights i found your site really helpful and interesting too. i have been really badly hit with the news and am considering a termination, which is very extreme, i know, but i cannot bear the thought of passing this defect on to future generations. Still very depressed and down. I would especially like to chat with other pregnant parents. It still surprises me how many people with LWD are out there. I have also joined the support group on the msn groups page. The hardest thing about all this is if my baby boy does present with LWD,is how will he cope with the short stature.This might seem really callous and selfish on my part and i cannot even justify it to myself! I am 4 fft 10 inches and proportionate. My short arms and wonky wrists are not immediately noticeable. I Have never had any pain in my wrists, even though following the corrective surgery at 14 i was told to expect arthritis as early as 21. I am 34 now and still no sign of it. Nobody seems to have the deformity in my family, though my dad is of short stature , around 5ft 2 , i think. Also i am of Indian origin and as a population we are not generally tall. My husband is british caucasion and is about 5 ft 10 inches. my daughter who is 19 months is about 78 cms high and seems to be well within the normal range. When i was tested ante-natally with her, we were told she did have the change /SHOX gene.
Hello, my name is M_ (female). I am 14 and from england. I have been diagnosed with mwd in my right wrist. It has become so bad and so painful that i now cannot write. To get through my school career i have to type out my work on a laptop. For my english project i need to research an intrest in my life, and i chose to research my deformity. I was wondering if i could join the wonky wrist club. The doctors have told me that i will have to wait until ive stopped growing before they can operate on my wrist, and that might take years, do you know of any alternate ways of correction?
Unfortunately, my MWD is gotten worse throughout the years therefore I'm having reconstructive surgery (partial fusion) on May 26, 09. I have faith that I have found the best upper limb extremety Doctor in Canada. If anyone is interested in more info pls feel free to contact me.
I am pleased that I found this site, I went to the doctors today and now know what is wrong with me, I have madelungs! Im 33 female, 5ft and have always know there is a problem, in my early teens I had a lot of visits to the hospital and nothing seemed to become of it, it was never really spoken about within my family, always seen as not important, on visiting the doctors today the condition is on my medical file and was identified when I was around 10 years old, cant remember why nothing else was done or why i, always had abit of mild pain, but now my wrists are now starting to cause me pain when im carrying to much. and I am now concerned that they are going to become worse as I get older, both my wrist are twisted and have bowed short forearms, reading the site has given me so much information that I did not know, and it is a comfort that im not the only one, ive always ignored comments and people looking at me, I do block it out and put off dealing with it, I come across as this doesnt bother me, but get upset in pivate and never talk about it. As reguards to my family, my cousin, who male, has been diagnosed of it, but doesn't really give him any trouble, has both wrists the same as mine but not as noticeable, and I also have another cousin ( not diagnosed )who is male and very short, so maybe some connection there. I am now going to the hospital next month and learning to deal with this!! Thanks to reading information on MWD I have a lot more clear understanding
Hi, my 12 year old daughter has been visiting a paediatritian for 4 years because I was concerned with her height (she has been sitting on the 3rd percentile on her growth chart despite my husband being 6'2 and me 5'4). A wrist x-ray for bone age found her bone age to be 2 years behind her actual age and also found her to have Madelung deformity in both wrists. I asked the orthopaedic surgeon if her short stature was related to her Madelung deformity and he said no. I then found your site and discovered they could be very related. Are there any measurements I could take without x-rays to check fore-arm and lower leg proportions to present this possibility to her specialist? Thank you for the wealth of information.
I (female) discovered your website through our local doctor. I'm living and working on _ [ a tiny atoll in the Pacific ,600 miles from any other atoll or any other island, betwen Hawaii and Guam ]. She has been very interested in my wrists and short arms. I always thought the deformity was called Madeline's deformity. She spent a couple of days researching and found your website. I was born in Long Beach, CA U.S.A. I have a severe case of MWD. My sister also has it as did my father. His mother had it and her father had it. We're not sure how far back in the family history it goes. A few years ago it was very painful but I've been pain free for a few years now. I've had several orthopedic surgeons wanting to do surgery for comsmetic purposes but decided surgery was too much of a risk. The looks of my wrists don't really bother me much anymore and when people ask what happened I just tell them I left them out in the rain and they warped and they usually laugh. I think it's kind of cool that it's very rare and I share this defomity with someone famous.
Hi there, my daughter has just been diagnosed with Madelung deformity. She is 13, and has been having pain in her wrists on and off for around 6 months. Today we saw Professor _ at Southampton General Hospital, and got the diagnosis. We have been told to think about surgery to correct it, and I would love to hear from anyone who has had surgery, and those that opted out of it, so we can make an informed choice on how to proceed. Nobody else in the family has any signs or symptoms of MWD at all. The consultant who my daughter saw yesterday told us that its very rare, and that he sees maybe 1 case a year. She does cope remarkably well, and only seems to struggle with some sports, especially volley ball, and some daily activities are difficult when the pain is bad. Thanks for setting up this group, there are no others for MWD, not that I can find anyway.
I am 53 with what I believe to be MWD in my right arm however have never been diagnosed. I have two daughters, my youngest daughter diagnosed with MWD at age 14 - she is now 19. Her arms are short as well as 4th and 5th didgits, her 2 knuckles are half back on her hand. Her forearms are bowed as well. She does have very long legs, most of the length in the legs is in her upper leg. She is 5'11. My other daughter may have normal height but not sure the lower portion of her leg is normal as she has very large calf's. I'm concerned after reading your article that this could be passed further. I have no knowledge of family history...... as both parents are dead 20+ years.
My name is C_, Kansas, and I am 22 years old. I have had unusual pain in my wrist my whole life. I have always had the abnormal looking ulna. I have went to the Dr. several times with the same response: xrays are normal. I started going to school to become a court reporting and started having sever pain in both my wrist. I went to the Dr. and again my xrays were normal. After a year of putting up with this pain my fingers started tingling and would often go numb. I decided I was going to a specialist. After seeing the xrays and the Dr.'s jaw dropping response, I was scared. The Dr. never told me that day what I had. He called me the next day (after looking it up) to tell me I had Madelung's. He doesn't feel comfortable treating it. He sent me to a neurologist and the results were a mild form of carpal tunnel. He is referring me to another Dr. but he is unfamiliar with this deformity also. He told me I will have to change my career plans and that this could be a lifelong issue for me. They are now wanting me to see a Dr. in St. Louis, MO. I have researched this Dr. and he is not too familiar either. I was wondering if there is a Dr. that is more familiar with this deformity. If I have to travel, I might as well go to someone who knows more about the subject. Thank you so much for this site. It has informed me more than any other site. It is very helpful to hear positive and negative feedback. I have my xrays from a year ago and I will be getting my most recent ones if you would like me to send you a copy. My family has not been diagnosed with this. My grandma does show signs of dwarfism. She is about 4'7" and at her tallest was 4'11" and my cousin is 5'2". Her daughter has been diagnosed with Turners Syndrome. I am unsure if they are related but the doctor I went to the other day said they have similarities in the bone deformity and may have came from the same gene. I am not sure though. Thank you so much.
I live in Toronto, ontario, canada My 13 yr old daughter was diagnosed with Madelung's deformity about 2 yrs ago. She had banged her arm at school, i took her to our local hospital emergency dept. The took x-rays, the doctor said it looked like she had a dislocated growth plate in her wrist. He told us to comeback the next day and he would give her a mild sedative and manipulate the growth plate back into place.When we came back the next day the doctor told us that he had shown her x-ray to the head of the dept, the dept head told him that it was not a disloctaion but in fact madelung's deformity, he himself had heard of it but never seen it. We were advised that it most cases do not present any problems. My daughter experiences mild to moderate discomfort and continuously complains of this.She has one wrist that is more promenant the the other , i also think that it affects her self esteem. I am not aware of anyone else in our family with it, but we have a large family, relatives that we have little contact with. Does anyone have any idea how many people are inflicted with this.
I read with interest your site as there doesn't seem to be much information on this subject! I am 37 years old, normal height (5 ft 6) and was diagnosed with madelungs some 10 years ago through having an MRI scan as doctors were a bit baffled. I have got by over the last few years but lately having pain and hardly any movement in one wrist. I am seeing my GP this week to try and start the process again. Could anyone tell me more about surgery available? I'm not aware of anyone else in our family having this although my mum has weak wrists. I did miscarry a baby girl at 16 weeks and when tests carried out it showed 'edwards' syndrome', she had no lower arms - never thought of it before but could have been linked possibly. I am hoping to see my GP with MRI scans this week to get the ball rolling. I am just concerned that at 37 years having trouble which may get worse.
For anyone in this circulation list, after reading this current file, and realise they have not been circulated. If they re-contact me stating their old email address and their [ CL ] code letter/number/country I can re-instate them. People with aol.com email addresses will have to contact someone else (non AOL ) in the list to get them to relay these circulated emails as AOL bounce Bcc , probably due to them falsely interpretting as spam and rejecting. Maybe this problem: Title "Mailings blocked" on http://technology.guardian.co.uk/weekly/story/0,,1580155,00.html
As of Oct 2005 all 14 AOL addresses removed from circulation/update emails. The properly constituted anti-spam/virus system would pass them all through with tagging of the title with *** SPAM *** , *** VIRUS *** or whatever. Leaving just the amended title, sender's address, and first 3 lines if they must do any deleting/disarming. Then the recipients can simply set a filter to divert into a probable-spam folder and periodically check the titles themselves for false inclusions, due to too many non-dictionary technical words or whatever, before deleting the lot. UK based NTL / ntlworld contacts are likely to be the next subgroup to be so excluded.
The wrist condition was recognised and then published by Herr Madelung in 1878 ( 17 years before X-ray images were invented) and later was named after him.
********************
Otto Wilhelm Madelung - Die spontane Subluxation der Hand nach vorne. Verhandlungen d. deutschen Gesellschaft fur Chirurgie 7:259-276,1878 ( The Spontaneous Forward Subluxation of the Hand- Proceedings of the German Association of Surgeons 1878 ) . Also in Arch.Klin. Chir 1878;23:395-412
I tried getting a copy of this journal article from a medical archive institute in Freiburg, Germany but their series of this journal go back to 1879. May 2002 I contacted Prof Dr Gudrun Rappold at Heidelberg and she forwarded on a copy of his article to me. The following is a rough transcript of that article . There are errors especially confusion between "e" and "c" as almost indistinguishable in the printed typeface plus usual mis-keyings. It not only contains archaic medical terms but is written in the German of one and a quarter centuries ago.
O W Madelung 1878 Journal Article ( <> German )
This 1878 article ,for the moment ,crudely translated into something resembling English but not as she is spoke. The gist of the paper is there. When both myself ,and a German speaking friend ,can find time, we will tidy up the translation. I am not a medic and know no German so it is surprising there is anything intelligible in this translation. I find sections of the technical medical journals on these topics to be fairly impenetrable even in English. It is an amalgam of a few online machine translations and use of a large German to English dictionary and a German medical dictionary at Boldrewood Medical Library. Untranslated words are in italics.
O W Madelung 1878 Journal Article ( <> English )
A recent return to OW Madelung and his work.
Part of article Journal of Hand Surgery (American) / Vol 31A, No 2, February 2006
*********************
And now the first publication of what later became known as Leri-Weill Syndrome. Just 4 weeks to get a copy of this 1929 French journal presumably from France via the British Library and that despite my journal reference to this article had Vol 53 not Vol 35.
Note may still be some uncorrected mistranscribed letters c / e / : i / l : t / f
Text only , the pictures were too indistinct to copy
Leri & Weill Journal Article,1929 ( <> French )
Bulletins et Memoires de la Societe Medicale des Hopitaux de Paris.
Une Affection Congenitale et Symetrique de Developpement Osseux: la Dyschondrosteosa
By Leri, A And Weill,J
Vol 35, 20 Dec 1929, pp 1491 to 1494
Later citations refer to this article, same page numbers and year, as Vol 53
Journal name abbreviated to Bull. Soc. Med. Hop. Paris
The following is my translation ,NB I have no knowledge of French or Medicine so read with that proviso. It is result of machine translation and use of a number of French Medical dictionaries. Should anyone, with knowledge of French, spot any errors distorting the meaning, please contact me
Leri & Weill Journal Article,1929 ( <> English )
*************************
After reading the German article I find it quite remarkable that knowledge and treatment of MWD for the next century after 1878 had hardly changed. To mollify any medics reading this file ; it was not until the 1970s that a more complete view of these syndromes began to emerge and from the 1990s an understanding of the background genetics emerged. These are very rare syndromes and it is to be appreciated that the ordinary family doctor would never in all likelihood come across anyone in his practise with these symptoms so to expect him to be aware of them is somewhat unreasonable. Even a regional skeletal specialist consultant may only come across a few such index cases in his working life. Of course he will probably see more followup related people with these conditions.
2) Years ago I made a "kummerbund" out of some space-blanket material that completely nullified the pain of a bout of shingles around the waist. My doctor did not believe me when I made a followup visit and I said I had had no need for the prescription of heavy duty pain killers he had made out 2 weeks earlier and wasn't needed either. Someone told me heat was useful against shingles but I had no hot-water bottle but I did have some of this mylar ,aluminised plastic, space blanket. Space blanket material is found in camping/outdoor pursuit shops costing just a few dollars. It is the material seen wrapped around marathon runners at the end of a race - sweaty bodies I would have thought was the worst possible case for use but never mind. Don't place immediately to the skin is it conducts heat out and radiates rather than the intended radiating heat back into the body. For wrists cut a piece of space blanket about 12 inches by 18 inches and fold 6 times down to 12x3 inches. Wrap a strip of thin cloth around to enclose and seal the edges by sewing. Stick a pad of hook velcro at one end and a strip of felt velcro where the overlap is when wrapped around the wrist. It does rustle a bit.
3) For anyone finding typing difficult including people with RSI then computer voice to text /speech recognition software has improved a lot recently. Once trained to your own voice and in an otherwise quiet environment produces very few errors in transcription these days. A useful test phrase for any such software is if it can pick up the difference between spoken "recognise speech" and "wreck a nice beach" each spoken in some sort of context to make it more realistic.
4) Saw Jerry Lewis promoting this pain management device http://my.webmd.com/content/article/54/65247.htm?z=3064_00000_2010_00_05 for chronic back pain ( Medtronic / Tame the Pain / Pain Pacemaker , keywords ). Don't know if it is relevant to MWD if anyone wishes to research.
5) Some tips that may as well be in the general domain for sufferers of arthritis or anyone else with weak or painful wrists.
Techniques for opening "vacuum" sealed pickle or jam jars.
1) Puncture lid with an awl/ brad-awl and cover hole with a gummed label. or 2) Invert lid into a pan of just boiled hot water then turn upright and unscrew or 3) Bash the lid (on the edge) with a sharp tap from a piece of wood about 2-3 inches square and 9 inches long
6) New drug Tocilizumab, for the treatment of rheumatoid arthritis, may have some use for MWD.
To join the Wonky Wrist Club , e-mail
diverse9@onetel.co.....m
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all 5 dots ..... between co and m )
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replace onetel.com with divdev.fsnet.co.uk part of the address and
remove the 9 .
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I have no structure for corresponding to anyone by telephone or letter. My original email address used to be diverse@tcp.co.... but got spammed out of existance, later diverse2 and diverse9 before the commercial at @
Telephone number - the same number as it has been since 1988 but email is now the preferred method of contact so number deliberately not placed here. Far too many junk calls.
I devote a block of time each day to replying to emails.
Some DCS/MWD UK contact numbers / addresses
This file is recognised by NHS Direct with annual snailmail validation, under "D" on here
http://www.prodigy.nhs.uk/PILs/pilAlpha.asp?stylesheet=4
Also "The following high quality evidence-based resources have been selected by our UK professional medical authors to answer your query on 'dyschondrosteosis and madelung wrist deformity' Patient Support Dyschondrosteosis and Madelung Wrist Deformity, 6 star rating " For Dutch speakers and For Dutch speakers Wanneer u per email met Nederlandse lotgenoten in contact wil komen, mail dan naar Paula (met als onderwerp Madelung, Lerie-Weill of dyschondrosteosis) op mailto:PK_1976@hotmail.co.....m (verwijder de 5 puntjes tussen "co" en "m")
An MSN group set up by someone mentioned in these files MSN group - LWS/MWD
or http://leriweil.multiply.com/
As it says in the URL One person's site "Kids with Madelungs "
or Archived "Kids with Madelung "
Bill Newman ,Manchester Dysplasias Research Group 0161 276 6506
Great Ormond St,Department of Clinical Genetics (SHOX Gene research)
30 Guilford Street,London,WC1N 1EH
Simon Thomas, WRGL Genetics, Salisbury District Hospital, Salisbury ,Wiltshire, SP2 8B , England
Details of one of the surgical corrective procedures
Another keyword for similar procedures is "orthofix"
Some DCS/MWD USA contact details
Dr. Pia Marttilla 1-800-444-9111 X 3078,Esoterix Endocrinology,LA, California.
Human SHOX gene database
SHOX Gene and DCS/MWD/LWS
Trial of growth hormone treatment for those with SHOX gene anomaly
A general collection of self-help groups for rare conditions
GeNeSIS - The Genetics and Neuroendocrinology of Short Stature International Study
A general site for dwarfism
A more technical article about MWD (registration is quick and straightforward as "general public" to obtain the full article )
Perhaps in the future everyone will look like this J Exp Zoolog B Mol Dev Evol. 2004 Mar 15;302(2):111-20. by Reinhard Stindl, Vienna
"In the absence of telomerase activity, telomeric DNA has been shown to shorten every time a cell divides. The concept of a mitotic clock based on the gradual erosion of telomeres is now generally accepted and has been confirmed in numerous plants and animals."
The origins genetically is probably a balanced reciprocal translocation of 2 genes technically 2;8(q32;p13) from American Journal of Medical Genetics 16:p589,1983. [That is the 32 section on the long, q, arm of the number 2 chromosome swapped with the 13 section of the short,p, arm of the number 8 chromosome. After derivation of the karyotype (separated and stained set of all the chromosomes) the long arm of chr 2 was obviously shortened and the short arm of chr 8 was obviously longer.] More recently located to part of the SHOX gene - Nature Genetics,p70,V19,May 1998. The SHOX gene is found in the Pseudo-autosomal regions (PAR1) of the sex chromosomes ,these PAR1 are adjacent to the ends (telomeres) of the p arms of the X and Y chromosomes. Although lying on the sex chromosomes they have a lot of similarity to genes that would appear on the non-sex, autosomal ,chromosomes hence pseudoautosomal. Suitable markers for the XY genes would seem to be DXYS6814,DXYS233,DXYS228 and DXYS234. Areas of interest are single C to T transition R195X,XY translocations p22,q12 and gene Xp22.3 or Yq11. From reference 17 "........haploinsufficiency of SHOX (Short stature homeobox- containing gene) is responsible for DCS,as affected families carried either large scale deletions (7 of 8 families) or a truncating mutation (1 family) of the gene..........
(haploinsuficiency relates to gene dosage ,if there is insufficient for the normal full transcription process). The absence of Madelung deformity in some short stature patients with SHOX mutations/ deletions (while others demonstrate both signs )remains an unexplained paradox. The variable expression of DCS features in individuals carrying terminal Xp deletions and XY unbalanced translocations similarly remains unexplained and might be due to either sex-chromosome- specific regulation or involvement of modifier genes".
Besides SHOX, there is evidence that a second gene is present in the human genome that, in its mutated form, causes an identical/ undistinguishable phenotype of Léri-Weill dyschondrosteosis. We are presently collecting families with Léri-Weill dyschondrosteosis that are not showing a SHOX defect in the coding or regulatory region in order to carry out a whole genome linkage analysis to pinpoint down this novel gene. Maybe you have a well established clinical/radiological diagnosis of "Léri-Weill dyschondrosteosis" but a SHOX mutation could not be confirmed and maybe there are also several affected members in your family. In this case I would be extremely interested in collaborating with you and I would be glad if you could contact us (.......@med.uni-heidelberg.de).
| SHOX Human Short Stature Gene -Summary of Mutations | ||||
|---|---|---|---|---|
| Exon | Amino acid change/stop position |
Nuclear change | Mutation type | Phenotype |
| 2 |
N77X |
197-198delCG |
Frameshift |
LWS |
| 2 |
E61X |
G272T |
Nonsense |
LWS |
| 2 |
V75X |
272delG |
Frameshift |
LWS |
| 2 |
X |
GT-IVS-AG |
Frameshift |
LWS |
| 3 |
Q112X |
G425T |
Nonsense |
LWS |
| 3 |
L132V |
C485G |
Missense |
LWS |
| 3 |
E149X |
G536T |
Nonsense |
LWS |
| 3 |
R153L |
G549T |
Missense |
LWS |
| 3 |
K181X |
572insGT |
Frameshift |
LWS |
| 4 |
R173C |
C608T |
Missense |
LWS |
| 5 |
R195X |
C674T |
Nonsense |
ISS |
| 5 |
R195X |
C674T |
Nonsense |
LWS |
| 5 |
Y199X |
C688G |
Nonsense |
LWS |
| 6 |
A224T |
G761A |
Missense |
ISS |
| 6 |
delH229-L232 |
776-787delC¥4aa |
Deletion |
ISS |
Source reference [ 44 ] March 2002
Nothing so simple as one mutation leading to one clinical manifestation. The above recorded mutations occur in a region of less than 200 Kbases at the telomeric end of the short arm which is about 10 Mbases from telomere to centromere .
Some Pictures/Graphics from the following journal sources
But first an internet site with a rarity a non-medical picture of someone with MWD (Shelby's Corner, Stretch Magazine )
Graphics drawn from Xrays of developement of MWD from ages 2 years,4 years and 6 years compared to normal (on left) from reference 32
Graphics drawn from Xrays of developement of MWD from ages 8 years,10 years and 12 years compared to normal (on left) from reference 32
The above sequence of images show MWD of someone's right arm from age 3 to 60 taken from family snap shots. The image ,age 10 , shows radial curvature. The last 2 images are after successful surgery.
Picture of the prominent ulna that the medics call "necropsy appearance" of MWD that didn't carry through the copying and scanning process very well from reference 6
"Bayonet" form of MWD of someone in this group
Close-up of the above
Two cases of differing MWD from reference 5 below
A severe case of MWD before quasi-successful corrective surgery, post operation on corresponding right arm shown in family album sequence above.
Case of MWD from 1938 reference 12 below also showing the foreshortening of forearms and "muscle-bound" or "popeye-arms" appearance.
"Bayonet Wrist" and Xrays in 2 perpendicular views showing the curved forearm bones and exaggerated space between leading to the "Popeye arm" or "muscle-bound" appearance from reference 16
Similar views with more pronounced curvature (hence muscular appearance) from reference 17
A picture of someone with mesomelia and MWD from ref 11. Unless you know what you are looking for the difference between F forearm length and U upper arm length are not immediately obvious. She also (from the X rays but not too apparent in this picture ) has the curved bones of the forearm that give the "muscle-bound" or "popeye" appearance. Note also (which was not referred to in the article) the wide nasal bridge.
Someone showing the effect in the lower leg from reference Journal of Bone and Joint Surgery, Vol 64B,No 3,p377,1982
Pictures of the mesomelia foreshortening in forearms and lower legs does not show too well but measuring of the bones does. The following is from 13 patients in one study, units are percentages compared to normal for that person's height in metres and age, not all data taken All are female except the last case.
height | ratio Radius/Humerus | ratio tibia/femur and age | Right Normal Left | Right Normal Left 1.5,54 | 69 75 72.6 | 63 83 1.36,11 | 71.7 74 73.2 | 71 85 1.5,20 | | 67 83 69 1.52,26 | 73.3 75 71.4 | 71.2 83 1.35,12 | 57.1 74 52.2 | 74 85 74 1.35,12 | 59.2 74 58.3 | 74 85 74 1.57,11 | 74 68.2 | 85 77 1.57,14 | 70 73 72.5 | 76 83 1.55,13 | 73 72 | 1.47,36 | 70.2 75 69.5 | 84 83 ? ? | 67.7 75 62.5 | ? ,? | 60.3 75 61.6 | 1.7 ,11 | 76.8 75 |from reference 8 below
From the Rappold book (ref 34 below) Anthropometric techniques
Upper Arm Length - Starting from the shoulder blade ,run finger laterally along ridge of scapula to tip of acromion (acromiale), and mark this point. Identify head of radius (caput radii or radiale) by paplpating space betwen humerus and radius at elbow,until you feel the head of radius, and mark this point. (when measuring make sure the marked points overlay the relevent bony part)
Forearm (lower arm ) length - With arm hanging loosely and palm facing forward, find styloid process of radius (processus styloideus or radial stylion ) - most prominent bony landmark at lateral wrist. Mark this point. Use previous upper arm mark .
Lower leg length (upper absent in this book) - Subject should be seated , with right ankle crossed over left knee. Find upper medial border of tibia (tibiale or condylus medialis),by running finger down patella until you reach tibial plateau,then move medially to edge of tibial plateau, and mark this spot. Find sphyrion tibiale (most distal point of tibia) by running finger upward from heel to point where tibia ends, a little distal to most prominent point of malleolus medialis (medial malleolus) and mark this point.
Medical Published Research in the Public Domain
1 American Journ. Dis Child. 132,1978,p1037 Xrays of an affected individual at age 12 and 45
2 Acta Radiol. Diag. 11,1971,p459 -4 generations with DCS
3 Clinical Pediatrics 1972,p281 -2 case studies,rather technical description
4 Italian J. Orth. Trauma. 1975,p141 3 generations,includes a tibial surgical intervention
5 Am. J. Roent. 1965,Vol 95/1,p178 -tabulated data focus on knee Xrays
6 J. Bone Joint Surgery V58B,p350 Aug 1976-Good overview with fairly simple terminology even if the title is wrong (Madelung Disease is a completely different condition).
7 J. Med. Genet. 1980,17,p41 -2 generations of family 4 affected out of 6 people
8 Radiology 93,1969,p1037 -Technical but clear X-rays and tabulated physiological data
9 Am. J. Dis.Child 120,1970,p329 -tabulated data of 8 patients
10 J. Pediatr. 68,No3,1966,p432 -Tabulated dimensional data and good differential comparison with related syndromes
11 Am. J. Dis .Child. November 1971-Representative photos of wrist and forearm appearance
12 Annals of Surgery 1938,p421 -17 pages lot of history,some graphics and good picture of bayonet wrists
13 Clin. Orthop 1976,May,No116,p24 -3 families also first published record of male to male transmission
14 Brit. J. Radiol. 47,1974,p634 -picture of male with "muscle-bound" forearm appearance
15 Nature Genetics V19,May 1998 p70-73 - Shox and DCS genetical analysis of 15 families up to 5 generations including a family of 82 over 5 generations with 43 affected individuals !
16 Nature Genetics V19,May 1998 p67-69 - Shox mutations in dyschondrosteosis, pictures and Xrays of "bayonet" MWD
17 American Journal of Medical Genetics 16:p589,1983 - 2;8(q32;p13) balanced reciprocal chromosome translocation and pictures of 4 family members showing Madelung wrists,mesomelia and cubitus valgas.
18 J. Med. Genetics 2001;38 :323 SHOX point mutations in dyschondrosteosis
Two archaeological cases:
30 Nature vol 330,5 Nov 1987 Dwarfism in an adolescent from the Italian late Upper Palaeolithic (Age) - Mesomelic dwarfism, relative shortening of forearms and lower legs and also restricted elbow movement. Radio-carbon date 11,150 +/- 150 years, age at death about 17 years and accorded special funereal treatment. "one of the few caves in Italy with parietal art. Thus, the site was an important social and/or ritual centre, and it is clear from the limited number of burials in the cave that only certain members of the population were of the status necessary to be buried there."
31 Journal of Medical Genetics October 2000, 37(10)E27 A Case of Dyschondrosteosis from Roman Britain
31b International Journal of Osteoarchaeology Volume 18 Issue 4, Pages 431 - 437
Abstract, Osteological examination of a 9th-11th century skeleton from Black Gate Cemetery, Newcastle-upon-Tyne, reveals Madelung's deformity of both forearms and shortened stature due to reduced tibial length.
32 Text book : Congenital Deformities of the Hand and Forearm by H. Kelikian ,1974,chapter22 -18 pages including very clear drawings derived from Xrays showing developement of Madelung wrists every 2 years from 2 yearold to 12 yearold and description of surgical procedure to correct wrist deformity
Understanding SHOX deficiency and its role in growth disorders: a reference guide
by Gudrun A Rappold,Judith L Ross,Rüdiger J Blaschke and Werner F Blum
Publisher TMG Healthcare Communications Ltd,62 Stert St,Abingdon,Oxfordshire OX14 3UQ,UK
ISBN 1 85113 265 1
A summary of the 130 page book :
Background to SHOX involvement in a number of stature syndromes - Leri-Weill,Madelung,Langer,Turner,Ideopathic Short and triple x (XXX).
Introduction to molecular genetics zeroing-in specifically to the SHOX gene. Introduction means introduction to practising endocrinologists and other physicians, for anyone else it would need further study to comprehend this sort of material. It covers the complex area going from details of the SHOX gene through transcription into biochemistry and on to the clinical expression.
There are two useful glossaries: clinical terms and molecular biology terms ,colour-code referenced throughout the book.
Appendices of genetic codes,codes for amino acids,pedigree analysis symbols, anthropometric techniques (to measure limb proportions etc) and anthropometric tables for ages 3 to 19 years for all the pertinent limb segments and list of abbreviations ( acronyms ).
40 Genome Research 1997 p1114 Man to Mouse-Lessons learned from the distal end of the Human X Chromosome
41 J Med Genet 1992 29 p455 Short Stature in a girl with a terminal Xp deletion distal to DXYS15...
42 J Med Genet 1999 36 p711 Loss of the SHOX gene associated with Leri-Weil ....
43 J of Clinical Endoc & Meta 2000 p245 Identification of Short Stature caused by SHOX defects and therapeutic effect of Recombinant Human Growth Hormone
44 J of Clinical Endoc & Metab 2002 p1402 Deletions of the Homeobox Gene SHOX are an important cause of growth failure in children with short stature.
45 Proc Nat Ac Sc March 1998 p2406 SHOT,a SHOX related homeobox gene...
46 Proc Nat Acad Sc Oct 1996 p10691 Cloning and characterization of four murine homeobox genes
47 J Med Genet 1995 32 p831 Short stature in a girl with partial monosomy of the pseudoautosomal region distal to DXYS15....
48 J of Clinical Endoc & Met 2001 p5674 Phenotypes associated with SHOX deficiency
49 J Med Genet 2001p323 SHOX point mutations in Dyschondrosteosis
50 Ann. Otol. Rhinol. Laryngol 112 (2003 ) p153 Congenital Conductive Hearing Loss in Dyschondrosteosis
51 J. Clin Endoc. Metab. ,Oct 2003, 88 (10) p4891 Auxology is a valuable instrument for the clinical diagnosis of SHOX Haploinsufficiency in school-age children with unexplained short stature.
52 Brit J. of Haematology 121, p375 Pseudosomal linkage of familial Hodkins Lymphoma : Molecular analysis of a unique family with Leri-Weill Dyschondrosteosis and H L.
An overview of the Medline accessible references
OMIM site
Medline Site
Medical Journals (abstracts only for us non-medics)
Background to a ,discontinued , court case where the mother was lying about her husband being the biological father to her daughter who had the appearance of MWD and her son who had the appearance of DCS. The husband had no family history of MWD or DCS but someone else did have such a family history.
MWD raised in a court case relating to a works injury
Newspaper story concerning DCS and growth hormone
I've grown 1cm since January Mar 9 2007 By Peter Henn A GIRL who suffers from a genetic disorder has won the right to NHS drugs that will help her grow. ... He added: Its good the PCT changed its mind after the YAs campaign, but it was wrong to not give her treatment, especially when it has proven so effective. South East Essex Primary Care Trust confirmed Chloes circumstances had changed, but said it could not speak about the case as it was a confidential matter. FACTBOX: *Leri-Weill Dyschondrosteosis (LWD) was first diagnosed by French neurologists Andre Leri and Jacques Weill. *It is a form of dwarfism marked by forearm and wrist deformities. *Sufferers of the syndrome are only expected to reach a maximum height of 140 cm. *Genotropin is a drug used to fight growth defects, and helps people with the problems reach a more normal height. A course of the drug costs the taxpayer between £122 and £278, but individual shots can range from £4.64 to £46.37.
For anyone interested this is the original of this file put on the internet on 31 January 1999, so 10 year anniversary in 2009 and still with the same URL surprisingly
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A summary of this file
The method I used for doing medical research into MWD (Madelung Wrist Deformity) and DCS (Dyschondrosteosis). The technique is probably applicable to other rare medical conditions. Some other names for these conditions and associated medical terms. Genetic background to MWD and DCS Two recognizable people who may have the appearance of these conditions. Two simple tests that in conjunction with X-rays etc could lead to a diagnosis of MWD. Numerous (anonymized) personal stories of people with MWD or DCS who have contacted me. For anyone who would like to join this, closed group, mailing list my contact details are at the end of these personal stories. Some of the published research articles in the medical periodicals on MWD and DCS.
Un sommaire de ce dossier
La méthode que j'ai employée pour faire la recherche médicale dans MWD (défaut de forme de poignet de Madelung) et DCS (Dyschondrosteosis). La technique est probablement applicable à d'autres conditions médicales rares. Quelques autres noms pour ces conditions et limites médicales associées. Fond génétique à MWD et à DCS. Deux personnes fameuses qui pourrait avoir l'aspect / fond de ces conditions. Deux essais simples qu'en même temps que des rayons X etc.. pourrait developer à un diagnostic des histoires personnelles (anonymes) de MWD. Numerous des personnes avec MWD ou DCS qui m'ont contacté. N'importe qui voudrait joindre ceci, groupe fermé, expédiant la liste mes détails de contact sont à la fin de ces histoires personnelles. Certains des articles édités de recherches dans les périodiques médicaux sur MWD et DCS..
Een samenvatting van deze pagina
De methode, die ik gebruikte voor medisch onderzoek in MWD (Madelung Pols Afwijking) en DCS (Dyschondrosteosis). De techniek is vermoedelijk toepasbaar op andere ongewone medische aandoeningen. Sommige andere namen voor deze aandoeningen en geassocieerde medische termen. Genetische achtergrond bij Mwd en DCS. Twee mensen in het openbaar, die misschien de karakteristieken / achtergrond van deze aandoening bezitten. Twee eenvoudige testen die samen met RÖNTGENFOTO'S enz. zouden kunnen leiden tot een diagnose van MWD. Talrijke (geanonimiseerde) persoonlijke verhalen van mensen met MWD of DCS, die met mij contact op hebben genomen. Wie zich aan zou willen sluiten bij deze (gesloten) groep-emaillijst, kan contact met mij opnemen (zie aan het einde van deze persoonlijke verhalen voor contactgegevens). Sommige van de gepubliceerde onderzoeksartikelen in de medische tijdschriften over MWD en DCS.
Wanneer u per email met Nederlandse lotgenoten in contact wil komen, mail dan naar Paula (met als onderwerp Madelung, Lerie-Weill of dyschondrosteosis) op mailto:PK_1976@hotmail.co.....m (verwijder de 5 puntjes tussen "co" en "m")
Eine Zusammenfassung dieser Datei
Die Methode, die ich für das Tun der medizinischen Forschung in MWD (Handgelenkmißbildung Madelung) und in DCS (Dyschondrosteosis) verwendete. Die Technik ist vermutlich auf andere seltene medizinische Bedingungen anwendbar. Einige andere Namen für diese Bedingungen und dazugehörigen medizinischen Bezeichnungen. Genetischer Hintergrund zu MWD und zu DCS. Zwei Leute im allgemeinen Auge, das das Aussehen / den Hintergrund dieser Bedingungen haben konnte. Zwei einfache Tests, die in Verbindung mit Röntgenstrahlen usw. zu einer Diagnose (der anonymised) persönlichen Geschichten MWD. Numerous der Leute mit MWD oder DCS führen könnte, die mit mir in Verbindung getreten haben. Jedermann, das dieses verbinden möchte, geschlossene Gruppe, Liste sendend meine Kontaktdetails sind am Ende dieser persönlichen Geschichten. Einige der erschienenen Forschungsartikel in den medizinischen Zeitschriften auf MWD und DCS..
Un resumen de este fichero
El método que utilicé para hacer la investigación médica en MWD (deformidad de la muñeca de Madelung) y DCS (Dyschondrosteosis). La técnica es probablemente aplicable a otras condiciones médicas raras. Algunos otros nombres para estas condiciones y términos médicos asociados. Fondo genético a MWD y a DCS. Dos personas en el ojo público que pudo tener el aspecto / el fondo de estas condiciones. Dos pruebas simples que conjuntamente con radiografías el etc podría conducir a una diagnosis de las historias personales (anonymised) de MWD. Numerous de la gente con MWD o DCS que me han entrado en contacto con. Cualquier persona que quisiera ensamblar esto, grupo cerrado, enviando la lista mis detalles del contacto están en el final de estas historias personales. Algunos de los artículos publicados de la investigación en los periódicos médicos en MWD y DCS..
Um sumário desta lima
O método que eu me usei fazendo a pesquisa médica em MWD (deformity do pulso de Madelung) e em DCS (Dyschondrosteosis). A técnica é provavelmente aplicável a outras circunstâncias médicas raras. Alguns outros nomes para estes circunstâncias e termos médicos associados. Fundo genetic a MWD e a DCS. Dois povos no olho público que pôde ter a aparência / fundo destas circunstâncias. Dois testes simples a que conjuntamente com raios X etc. poderia conduzir a um diagnóstico de histórias pessoais (anonymised) de MWD. Numeroso dos povos com MWD ou DCS que me contataram. Qualquer um que gostaria de juntar este, grupo closed, enviando a lista meus detalhes do contato estão no fim destas histórias pessoais. Alguns dos artigos publicados da pesquisa nos periodicals médicos em MWD e em DCS..
Sammanfattning
Metoden som har använts för att söka efter medicinsk information om om Madelungs deformitet (MWD) samt Dyschondrosteos (DCS även kallat Leri-Weils syndrom), kan användas för att söka efter information om andra sjukdomar. (Vet du inte hur man lättast söker efter information i databaser kan du vända dig till närmaste bibliotek - de brukar ordna kurser i informationssökning som ofta är gratis.) Här nämns två offentliga personer som eventuellt kan tänkas ha dessa sjukdomar. Det beskrivs vidare två enkla tester som kan komplettera röntgenundersökning för att fastställa en diagnos av Madelungs deformitet. Genetisk bakgrund för Madelungs deformitet och dyskondrosteos. Personliga berättelser från personer som har kontaktat gruppen finns även publicerade på den här sidan, liksom referenser till publicerat material samt länkar till sajter/databaser där man kan söka efter mer information. De som vill komma i kontakt med den här slutna gruppen kan nå mig via adressen längst ner på sidan.
Un sommario di questo documento
Il metodo che ho usato per fare la ricerca medica su MWD (deformità del polso di Madelung) e su DCS (Dyschondrosteosis). La tecnica è probabilmente applicabile ad altre malattie rare. Altri nomi per queste malattie e termini medici associati. Priorità bassa genetica a MWD ed a DCS. Due persone famose che sembrano avere queste malattie. Due prove semplici che insieme con i raggi X ecc potrebbero condurre ad una diagnosi del MWD. Numerose storie anomine di persone con MWD o DCS che si sono messe in contatto con me. Chiunque voglia unirsi a questo gruppo chiuso, alla mailing list. I miei recapiti sono alla conclusione di queste storie personali. Alcuni degli articoli di ricerca pubblicati nei periodici medici su MWD e su DCS..
Hebrew
סיכום של הקובץ הזה בעברית השיטה שהשתמשתי בשביל לעשות מחקר רפואי בעניין MWD ( Madelung Wrist Deformity שורש היד של מאדאלאנג ) ו DCS ( דיסצ'ונדרוסטאוסיס ) היא טכניקה שקרוב לוודאי ניתן ליישם גם עבור ליקויים בריאותיים נדירים אחרים. ישנם כמה שמות נוספים לליקויים ולמונחים הרפואיים האלה. רקע גנטי לגבי MWD ו DCS : שתי אוכלוסיות שבעיני הציבור אולי יהיו בעלי ההופעה/ רקע של התנאים האלה. שני מבחנים פשוטים שביחד עם רנטגנים וכו' יכלו להוביל לדיאגנוזה של MWD . סיפורים אישיים של אנשים (בעילום שם) עם MWD או DCS שפנו אלי. לכל אחד שרוצה להצטרף לקבוצה הסגורה של רשימת הנמענים שברשותי, ישנם פרטי התקשרות אלי בסוף הסיפורים האישיים האלה. כמה מהמאמרים של המחקר על MWD וDCS שהתפרסמו בכתבי העת הרפואיים.
or Summary in HebrewPodsumowanie tego pliku
Metody uzywam do wykonania medycznego badania na wykrycie MWD (DEFORMACJA MADELUNGA NADGARSTKOW) i DCS (Dyschondrosteosis). Technika jest prawdopodobnie przydatna do wykrywania innych rzadkich medycznych wad. Niektore inne nazwy dla tych roznic i polaczenia medycznych terminow. Genetyczne tlo MWD i DCS. Dwie mozliwe do poznania osoby ktore moga miec ukazane takie warunki. Dwie proste proby ktore w polaczeniu z Przeswietleniem itp moga poprowadzic do diagnozy MWD. Liczne osobiste historie ludzi z MWD albo DCS ktore maja kontakt ze mna. Dla kogos kto chcialby wstapic do tej, zamknietej grupy, wyslijcie poczta opis moj kontakt i szczególy sa na koncu tych osobistych historii. Nieco publikowanych paragrafow na temat wykrywania MWD i DCS w medycznych czasopismach.
Et resume af denne fil/tekst
Den metode jeg har brugt til at lave den medicinske studie i Madelungs deformitet og Leri - Weill dyschondrosteose.
Teknikken er sikkert brugbar for søgning på andre sjældne medicinske tilstande/sygdomme.
Andre navne for disse sygdomme/tilstande og associerede medicinske benævnelser. Genetisk baggrund for Madelungs deformitet og Leri-Weill dyschondrosterose. To kendte mennesker som måske har disse tilstande og baggrunden for denne observation.
To simple test, som sammen med røntgenbilleder kan lede til en diagnose på Madelungs deformitet.
Flere anonyme personlige historier fra personer med Madelungs deformitet og Leri-Weill-dyschondrosterose, som har kontaktet mig. For alle som ønsker at blive medlem af denne lukkede gruppe, mailings-liste og mine kontaktdetaljer er efter disse personlige historier.
Nogle af de udgivede forskningsartikler fra tidsskrifter omhandlende Madelungs deformitet og Leri-Weill dyschondrosterose.
Apologies, ignore the following ridiculous situation. Because of SEO,
search engines now
only index the text appearing in browsers, it should properly be hidden
from browsers. It is mainly keywords condensed out of the previous
year sub-files to this file.
Unicode problems with foreign script
Use XVI32 Hex editor to remove BOM characters [ Zero Width Non-Breaking
Space (ZWNBSP) ]
255,256 / FEFF from
the top of file and 00 intercharacter spaces. Convert Hex character codes
to &#....; decimal codes that both browsers and Google Cached seem
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0D 0A is hex code for end of line. Thereafter for English updates save file
as ANSI , not Unicode. To convert Hex text to decimal change line breaks to *
and with no line wrap form single lines of text about 100 characters long,
submit to Google search which returns then as &=....; code. Change * to 0D 0A
madalin madaling discondrostis discondrosteosis madalins medalin medellin madellin medaling medalins madalin madalins
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mandolins
fash5.jpg
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ANYONE FINDING KEYWORDS HIGHLIGHTED IN THIS LIST
between comment tags - they are condensed keywords from the
year files
dysch2001.htm
dysch2002.htm
dysch2003.htm
dysch2004.htm
dysch2005.htm
2001, 29 contacts plus 12 previously
^L in Sweden
^R in UK
^M in the UK
^M in Holland
^ R2 in the UK
^ T in Canada
^ L in Canada
^ D2 in e-m contact
^ C3 in the USA
^ S in the UK
^ D2 in the USA
^ S2 in the USA
^ K in the USA
^ B in New Zealand
^ J in the USA
^ R2 in the USA
^ M in Canada
^ C in Australia
^ L in Northern Ireland
^ A2 in the USA
^ M in Australia
^ M2 in Canada
^ W in the USA
^ L2 in Canada
^ H in the USA
^ S2 in the UK
^ S in New Zealand
^ J2 in the USA
^ S3 in the USA
2002, 23 contacts
From V in the UK by contact by telephone
From S4 in the USA in e-m contact
From G in the UK in e-m contact
From L in the USA in e-m contact
From S5 in the USA in e-m contact
From K2 in the USA in e-m contact
From J3 in the USA in e-m contact
From J4 in the USA in e-m contact
From S6 in the USA in e-m contact
From I in Holland in e-m contact
From C4 in the USA in e-m contact
From G in the USA in e-m contact
From J5 in the USA in e-m contact
From J6 in the USA in e-m contact
From B in Australia in e-m contact
From S in Australia in e-m contact
From K3 in the USA in e-m contact
From L2 in the USA in e-m contact
From J7 in the USA in e-m contact
From C5 in the USA in e-m contact
From L in the UK in e-m contact
From M3 in Canada in e-m contact
From M4 in Canada in e-m contact
Up to April 2003 USA D3 76 contacts
2003, 24 contacts
S7 in the USA [ CL ] MWD
M2 in the USA [ CL ] MWD and DCS
A in Canada [ CL ] MWD
T in the USA [ CL ] MWD
K4 in the USA [ CL ] MWD
A2 in Canada [ CL ] MWD and DCS
A3 in Holland [ CL ] MWD
A3 in the USA MWD
M in Norway MWD
D3 in the USA MWD
M3 in the USA snail-mail MWD
L in New Zealand [ CL ] MWD
M4 in the USA [ CL ] MWD
F in Chile MWD
? in England (NW) MWD + DCS
N in the USA MWD + DCS
M2 in Australia [ CL ] MWD + DCS
L2 in the UK [ CL ] MWD + DCS
D in Australia [ CL ] MWD
E in the uk [ CL ] MWD
A4 in the USA [ CL ] MWD
M5 in Canada, MWD + DCS
H in the UK, MWD
S2 in Australia [ CL ] MWD
23 (24 - B in the uk , to 2005) contacts in 2004
M5 in the USA
J in N Ireland
L in Australia
E in the USA
H in the USA
S2 in the UK
C in the UK
T in Australia
UK telephone contact
K5 in the USA
J-? in ?
A3 in Canada
C2 in the UK
A4 in Canada
S4 in the UK
K6 in the USA
M-? in ?
A5 in the USA
K7 in the USA
M2 in Holland
C6 in the USA
J2 in the UK
? in Peru,
20 Contacts in 2005
M6 in the USA
J8 in the USA
N in Israel
P in uk?
B2 in the USA
D4 in the USA
B in the UK ,Scotland
T2 in Canada
K8 in the USA
C7 in the USA
L3 in the USA
C3 in the UK
L3 in the UK
H2 in the USA
A6 in the USA
P in the USA
S8 in the USA
S3 in Australia
S9 in the USA
A7 in the USA
19 contacts in 2006
S10 in the USA
C4 in the UK
I in Israel
J9 in the USA
T2 in Australia
B in Brazil
L in Denmark
S11 in the USA
J10 in the USA
J in Holland
A8 in the USA?
T2 in the UK
S12 in the USA
S13 in the USA
G2 in the USA
J11 in the USA
L3 in Canada
From a medical director of Red Cross in _ _, Mexico
ANYONE FINDING KEYWORDS HIGHLIGHTED IN THIS LIST
between comment tags - they are condensed keywords from the
year files
dysch2001.htm
dysch2002.htm
dysch2003.htm
dysch2004.htm
dysch2005.htm
dysch2006.htm
Kienbock Disease, Lunatomalacia, Osteochondrosis of the Lunate Bone,
ability, able, abnormality, abnormally, about, above, abreast, absolutley, accept, accepted, access,
accident, accident, according, accordingly, account, accounts, accupuncture, accurate, ace, ache,
aches, achievements, achondroplasia, acknowledge, acknowledged, acquainted, acquired, across,
actions, activated, active, activities, activity, actual, actually, adapted, add, added, addition,
additional, address, addressed, addresses, adequately, adjust, adjusted, adjustments, admitted,
adopt, adopted, adress, adult, advance, advantage, advantages, advice, advised, advises, advising,
aesthetic, affect, affected, affected, affecting, afflicted, africa, after, afternoon, afterwards, again,
against, age, aged, agency, ago, agree, ahead, air, airforce, aked, align, alive, all, all, alleviate,
alleviating, allot, allow, allowance, allowing, allows, alltime, almost, alone, along, alot, already,
already, also, alterations, alternate, alternative, although, always, am, amazed, amazing, america,
american, amongst, amount, amused, an, anabled, analyst, ancestors, ancestry, and, and/or,
anecdote, auxology ,
angle, ankle, ankles, ankles, annoy, anomaly, another, answer, answers, ante-natal,
anti-inflammatories, anti-inflammatory's, anymore, anyone,
apparent, appear, appearance, appeared,
appearence, appears, applied, applies, apply, appointment, appologize, appreciate, appreciated,
approach, approx, april, architecturally, are, area, areas, aren't, arm, arms, arms, , arms,
arose, around, arranged, arrived, art, arthritis, arthrodeses, arthroscopy, arthrosis, article, articles,
, ashamed, aspect, aspect, aspects, assertain, assess,
assessed, assistance, associated, assumed, assuming, assured, athletic, attempt, attended,
attends, attention, attitude, august, aunt, auntie, aunts, australia, auto, autosomal, available, avid,
avidly, avoid, awaiting, awards, aware, awareness, awkward, awlful, b, babies, baby, baby's,
back, back-ache, background, backwards, badly, badminton, baffled, ball, bandage,
bandages, bang, bar, barely, bars, base, baseball, based, basically, basicly, basis, basketball, bass,
bath, battle, bayne, bayonet, beaking, bearable, bearing, became, because, become, becomes,
becoming, bed, begging, begin, beginning, begun, behalf, being, belcher, belief,
believe, believed, believing, below, benefit, bent, besides, best, better, between, beyond, big, bigger,
biggest, bike, bilat, bilateral, bilaterial, birth, birth, bit, blank, bleeds, blessed, blessing, blessing,
blood, blooded, blount, blount's, board, body, body, body's, boiling, bone, , bones,
boots, boots...just, born, both, bother, bothered, bothering, bothers, bottom, bought, bounds, bout, bouts, bow, bowed, bowing,
bowl, bowleggedness, bowling, box, boy, boyfriend, boys, brace, bracelets, braces, brake, break, , breaking, brilliant, bring, bringing, broke, broken,
brother, brothers, building, bulging, bullied, bump, 'bump', bumps, burned, burning, business, busy, but, buying, by, c, c3, c4, c5, call, called,
calming, calves, came, can, can, canada, canadian, cancelled, cancer, cannot, canoeing, care, career, careful, carefully, carpal, carpals, carpel, carpul, carried, carry, carrying, cartilage, case, cases, cast, casted, casts, cat, catalogues, catch, catches, cause, caused, causes, causing, celebrex, centred, certain, certainly, cervical, chain, chair, chance, change, changed, characteristic, characteristics, chatted, check, checked, checking, cheerleader, chest, chidren, chief, child, childhood, children, children, children's, chile, chin, chin-ups, choice, choices...either, choirs, choosen, choosing, chopped, chromosome, chronic, circa, circulation, city, cl,
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madlung,
couple, course, cousin, cousins, cracked, cramping, crazy, crazy, created, creating, cried, cruelly, crying, ct, culminated, curently, curiosity, curious, current, currently, curve, curved, customer, cut, cuts, cyst, cysts, d, d2, d3, dad, dad's, daily, damag, dangling, danish, date, daughter, daughter, daughters, daughter's, daunting, david, david's, day, days, dcs, dcs+mwd, dead, deal, dear, deceased, december, decide, decided, decieded, decipher, decision, declined, decrease, deeply, defect definately, definite, definitely, definitions, deformation, deformaty, deformed, deformities, deformity, , deformity-madelungs, deformiy, defornity, degenerating, degeneration, degenerative, degree, degrees, deletion demand, demanding, denervation, denial, department, dependably, dependant, deposits, depression, dept, descent, describe, despite, detail, detailed, details, deteriorate, deteriorating, develop, developed, develops, device, dexterous, diabetic, diagnoised, diagnose, diagnosed, 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editorial, educated, education, effect, effects, efforts, eg, eh, eight, either, elapsed, elbow, elbows, eldest, electric, elementary, eligable, embarassed, embarassment, embarrassed, embarrassment, emergency, emerging, emotional, employers, employment, enable, enabled, encourage, encouraging, end, end, ended, ending, endocrinology, ends, engine, england, english, enjoy, enjoyed, enjoys, enormous, enough, enough, entering, entire, entries, entwined, equally, equipment, erratically, escalated, especially, essex, establish, esteem, etc, eternally, europe, evaluated, evaluation, evaluations, evidence, exact, exactly, examining, example, exams, except, excess, excessively, exchange, excited, exclusion, excuse, exercise, exercised, exercises, exostosis, expect, expecting, experience, experienced, experienceing, experiences, experiencing, experimental, expert, expertise, , experts, expla, explain, explaination, explained, explaining, explanation, explaning, exrays, extensions, extensior, extensive, extensively, extent, extra, 'extra, extra-bones, extreme, extremely, f, face, facility, facing, fact, facts, fair, fairly, faith, fall, fallen, falling, familiar, families, family, far, fascinated, fascinating, fashioned, fast, faster, fastest, fat, father, fathers, father's, fatigue, favorite, feb, feed, feel, feeling, feels, feet, fell, fellow, felt, female, females, fertility, few, fibers, fibrocartilagenous, fibromyalgia, fibromyalgia, fifth, fifty-eight, fight, fighting, figure, file, file/s, file}, filled, finally, find, finding, findings, fine, , fine, finger, fingers, finished, finland, first, firstly, fit, fits, five, fix, fixed, flat, flexibility, flexibilty, flexing, floppy, fluke, folks, folloup, follow, following, followup, follow-up, food, foot, football, for, forarms, force, forearm, forearms, foreshortened, forever, forget, forgot, form, formal, formation, formed, forth, fortunate, fortunately, forum, forward, forwards, fought, found, fourteen, fourteen-year-old, foward, fracture, fractured, frankly, fraternal, free, freely, french, frequent, frequently, friction, friday, friend, friends, from, front, frustrated, fsnet, ft, full, fun, function, functioning, fund, funny, further, fuse, fused, fusing, fusion, future, g, ganglion, gaurds, gearstick, gender, gene, genealogist, general, generally, generation, generations, genes, genetecist, genetic, geneticist, geneticists, genetics, geographical, get, getting, girl, girlfriend, girls, glad, gladly, glasses, gloves, glucosmine, go, god, going, golfer, gone, good, goodness, got, gotten, government, gov't, gp, grabbed, grade, grades, graduate, grand, grandchildren, granddaughter, grandfather, grandma, grandmother, grandparent, grandview, grasps, grateful, great, great, great-great-, greatly, greek, green's, grew, grip, gross, group, group, groups, grow, growing, grown, growth, guess, guide, guitar, guy, gym, gymnast, gymnastics, gymnasts, gyms, h, habit, had, had-surgeries, hahaha, hairline, half, halfback, half-sister, hampshire, hand, handed, handicaps, handle handles, hands, handstand, handstands, hang, hanging, hangs, happen, happened, happens, happy, hard, hardest, hate, hates, head, heads, heal, healed, health, 'healthier', healthy, hear, heard, hearing, heart, heart, heat, heavy, height, height, held, hello, hello, help, help...do, help, helped, helpful, helping, helps, help's, hemming, hendrix, her, her, here, heredetary, hereditary, heredity, heriditary, herited, hers, herself, he's, hi, hid, hide, hiding, high, high, highly, him, himself, hindered, hinged, hint, hip, hip...took, hipbone, hipbones, hips, hire, his, his/her, history, hit, ho, hold, holds, holland, home, hope, hopeful, hopefully, hopes, hoping, horizontal, horrendous, horrible, horrified, horse, horseback, hospital, hospital's, hot, hour, hours, how, however, huge, humor, hungary, hurt, hurting, hurts, husband, hydrocondroplasia, hyper, hypochondriac hypochondroplasia, hypoplastic, hysterectomy, i, icyhot, i'd, idea, ideas, identification, identified, ie, if, iherit, ilizarov, ilizarove, ill, i'll, im, i'm, image, imagine, imformation, immeasurable, immediate, immediately, immobility, impact, impacted, impaction, impaired, implications, important, impossible, impressed, impromptu, improper, improve, improved, improvement, in, in, inability, incapable, incase, inch, inches, incidence, include, include-both, including, inconsideration, increased, increasingly, incredible, incredibly, indeed, independent, index, individual, individuals, induced, infiltration, influence, info, information, information, informative, informed, inherit, inherited, inheriting, initial, initially, injecting, injections, injured, injury, inquire, inquiries, inquiring, insight, insisted, instance, instances, instead, instep, instructed, insurance, intend, intensified, intensive, interbreeding, interest, interested, interesting, interesting, interestingly, intermediate, intern, international, internet, intervention, into, intrigued, investigate, investigations, involved, involves, involving, inward, ireland, irritated, is, isnt, isn't, isolated, issue, issues, it, it, it, it...makes, it, italian, italy, items, jam, january, jar, jars, jimi, job, jobs, joined, joint, , joints, journal, journel, july, jumped, june, junior, just, jutted, , keep, keeps, kept, kettle, keyboard, keyboards, keys, keywords, kid, kidding, kids, kill, killers, kilos, kind, kindergarten, knee, knees, knew, knob, knobby, knobiness, know, know, knowing, knowledge, knowledgeable, known, knuckle, knuckles, labour, lack, landed, lap, lap...purses, large, last, lasted, lasts, lately, later, lawn, lead, learn, learned, learning, least, leaving, lectures, led, left, lefty, leg, legs, length, lengthen, leri, leri-weil, leri-weill, leri-weill's, leri-wells, less, lessen, lessons, let, lets, letter, letters, letting, levels, librarian, lie, life, life, life, lifestyle, lift, lifting, ligament, ligaments, lighter, like, like, liked, likely, likelyhood, liltle, limb, limit, limitations, limited, limp, limping, line, link, links, list, listening, literature, litle, little, little, live, lived, lives, living, local, located, london, long, longer, look, looked, looking, looks, loose, lose, losing, loss, lost, lot, lots, love, low, lower, luck, luckily, lucky, lump, lunate, lwd, lws, l-ws, lying, machine, madalung, made, madelung, -madelung, madelung, madelung`s, madelungs, madelung's, madelungs, madlungs, madulung, mail, mailing, main, mainly, maintaining, major, majority, make, makes, making, male, males, malformed, man, managed, managing, manchester, manifestation, manipulate, manner, manning, manual, manuals, many, march, marked, married, massage, massager, maternal, matter, matters, matured, may, maybe, md, md/lwd, mdw, me, me, me, meaning, means, meant, meantime, measured, measurements, measuring, mechanic, mechanism, med, medial, medially, medical , medical , medical, medication, medications, medications-, medicine, meds, meet, member, members, memory, mendel, mendelssohn, mention, mentioned, merles, meso-americans, mesomelia, message, messy, met metacarpal, metacarpals, metal, metaphyseal, metatarsal, meter, methods, methotrexate, mexican, mexico, mid, mid-20's, middle, might, migraines, mild, mild/moderate, milder, mildly, military, milk, mind, minded, mine, minidisk, minimal, minor, minute, minutes, miracle, miracles, mirror, misaligned, misdiagnosed, misplaced, mispronounced, misremembered, miss, miss-diagnosed, missed, misshapen, misshappen, missing, mission, mix, mixed, mixer, mobility, mom, moment, mom's, money, month, months, more, morning, morton, moscow, most, most, mostly, mother, mothers, mother's, moths, motion, motorcycles, move, movement, movment, mr, mri, m's, mths, much, much, much, mum, mums, muscle, muscles, muscular, music, must, mutated, mutation, mwd, mwd, mwd+dcs, nags, name, named, national, native, near, nearly, necessary, necessary, neck, need, needed, needle, needles, needless, needs, negative, neighbor, neither, neoprene, nephew, nerve, nerves, nerves, net, neuscense, never, new, news, next, nhs, nice , night, nightmare, 'nobble', non-painful, noone, nor, normal, normal, 'normal', normally, northern, norway, not, note, noted, notheless, nothing, nothing, noticable, noticably, noticeably, noticed, notices, noticible,, numb, number, numbness, numerous, objects, observation, obtain, obvious, obviously, occasion, occasional, occasionally, occasions, occupation, occur, oct, odd, oddly, odity, odly, off, offer, offered, officially, offset, offspring, often, old, older, oldest, onset, onto, opening, operable, operate, operate, operated, operation, operations, operative, opinion, opinions, opinon, opted, option, options, or, order, original, orth, orthapaedic orthapedic, ortho, orthopaedic, orthopedic, orthopedics, orthopedist, orthopetic, orthos, os, oslo, osteoarthritis, osteotomy, ouch, our, out, outcome, outcomes, outer, outside, outward, outwards, ouver, ovary, over, overall, overcame, over-compensation, overgrow, overhead, overshadowed, overstepped, overtime, overuse, own, p, pa, pack, page, page, pages, pain, pain, painful, painfully, painkillers, pain-killers, pain-relief, pains, palm, palms, pan, pant, pants, papers, parallels, paralysis, parent, parents, parrallels, part, participate, participating, particular, parties, partly, parts, pass, passed, passing, passion, past, paternal, pathetic, patient, patients, pattern, peace, peculiar, pediatric, pen, pension, people, people, peoples, people's, peoples', per, percent, perfect, perforated, perform, performed, performing, perhaps, period, periodic, periods, permanent, permanently, permantley, permission, perocet, persists, person, personal, personaly, persued, pertaining pesky, phase, phd, phisiotherepist, photographed, photos, photo's, physical, physically, physician, physicians, physio, physiotherapy, physio-therapy, physiotherapy, piano, pick, picture, pictures, piece, pigeon, pillow, pillows, pinned, pins, pitcher/outfielder, pitching, place, places, placing, plan, planned, planning, plaster, plastic, plate, plates,player, plentey, pls, plus, pms, pncl, point, pointed, pointing, poland, pop, popeye, portion, position, , positions, positive, positve, possibility, possible, possibly, postings, postion, posture...think, pour, pouring, pout, power, practice, practicing, precious, predominant, pre-existing, pregnancy, pregnant, preliminary, prepare, prepared, prescribed, present, presently, presents, presevere, press, pressure, prestigious, presumed, pretended, pretty, prevalent, prevent, preventatvie/corrective, previous, pride, primarily, prior, probability, probably, problem, problem/anomaly, problem, problems, procedure, procedure, procedures, process, prof, profession, professor, profitable, progress, progressed, progresses, progressive, progressively, prominent, promised, prone, pronounced, pronunciation, proof, proper, properly, proportion, proportioned, protested, protrude, protruded, protruding, proud, provide, provided, providing, provisional, proximal, psychological, pt, publish, pubmed, pull, pulled, pull-ups, purchase, pursue, push, pushing, pushups, put, puts, putting, puzzle, puzzled, pychiatric, qualify, quarterzone, radial, radii, radiologist, radio-ulnar, radius, radius, radius-as, rafting, raised, raises, ran, range, rare, rarely, rate, rather, rayed, rays, reach, reached, reaching, read, reader, reading, ready, real, realaxer, realignment, realised, realize, realizing, really, reason, reasons, rebreak, recall, rec'd, received, receiving, recenly, recent, recently, recessing, recognise, recognised, recognized, recollection, recomended, recommend, recommend, recommended, reconstruction, , recontact, record recorder, recording, records, recover, recovery, reduce, refer, referred, referrred, reflects, refused, regain, regained, regaining, regarding, regards, regretted, regular, regularly, rejected, relate, related, relates, relation, relations, relatively, relatives, relax, relaxing, relaying, relevant, reliable, relief, relieved, reluctant, remain, remember, remembered, remind, reminds, removal, remove, removed, reopen, reopened, repaired, repeating, replace, replacement, reply, report, reported, request, requested, require, required, requires, requiring, research, researching, resent, resort, respect, respond, respondents, response, responses, rest, resting, restriction, restrictions, result, resulted, results, results, retirement, retrain, retrained, return, returned, revert, reviewing, rhumatologist, ride, riders, riding, right, risk risks, rock, rocked, rocking, roll, room, rotating, round, routine, royal, rubbing, rules, runner-up, runs, rural, rus, rushing, sacrum, said, salesman, sam, same, sample, scan, scandanavian, scans, scar, scared, scary, scenario, schedule, scheduled, school, school, science, scientific, scoliosis, scotland, scratching, screen, scurvy, search, searching, second, secondly, secretary, section, secure, segments, self, self-conscious, self-esteem/, send, sending, senior, sense, sensitive, sensitivity, sent, separated, separating, separation, serious, served, service, set, setting, seven, several, severe, severely, severity, severly, sex, shake, , shape, shaped, share, shared, sharp, shaved, she, shear, shelf, she's, shirt, shirts, shock, shocked, shoes, shoot, shopping, short, shorten, shortened, shortening, shorter, shortest, shortness, shorts, short-sleeved, shots, should, shoulder, shoulders, shovel, show, showed, showing, shox, sibling, siblings, sic, sick, side, sided, sides, signed, significantly, signs, silly, similar, simple, simplify, simply, since, sincerelly, sincerely, sine, single, sister, sisters, sister's, sit, site, site, sites, sitting, situation, situations, six, size, skateboarding, skeletal, skimmed, skin, skirts, slam, sleep, sleeping, sleeved, sleeves, slept, slid, slight, 'slight, slightly, slot, sloughed, slow, slowing, slowly, small, snail, snailmail, snail-mail, snakes, snap, snow, so, soccer, sofar, solves, something, something's, son, sons, son's, soon, soooo, sore, sorry, sort, sought, sound, sounded, sounds, south, sp, sp, spanish, speak, speaks, special, specialist, 'specialist', specialists, specializes, specially, specific, specimen, speed, spend, spending, spinal, spine, splint, splinted, splinting, splints, spoke, sporadic, sport, sports, sportsman, sprain, sprained, sprains, spur, spurs, square, stage, stand, standard, standing, state, states, statue, stature, stay, stayed, staying, steering, stength, step, steriod, stick, sticking, sticks, stiff, stiffness, still, stimulating, stir, stitches, stood, stop, stopped, stops, store, stories, story, storyof, storys, straight, straight, straighten, straightened, straightening, strain, strange, strength, strenuous, stress, stretched, stretching, strong, strongest, structure, struggle, struggled, student, students, student's, studied, studies, study, studying, stuff, stumbled, stunted, stunts, stupidity, suave-kapandji, subject, subjected, sublux, submitted, succesful, success, successful, such, sudden, suddenly, sued, suffer, suffered, sufferer, sufferers, suffering, suffers, suggested, suggesting, suggestion, suitable, suits, summer, sunday, super, supermodels, support, , supporting, supposed, sure, surface, surfaces, surfing, surgeon, surgeons, surgeries, surgery, surgery bilateral, surgical, surgon, surprise, surprised, surprising, surprisingly, surround, suspected, suvere, swat, swatted, sweden, swedish, swimming, swing, swings, swollen, swung, symptom, symptom, symptoms, symtoms, syndrome, synostosis, systems, t, tablets, taboo, tall, taller, tasks, tax, taxation, teach, teacher, teachers, teachers, teaching, team, teams, tear, tease, teased, technique, teen, teens, telephone, tell, telling, ten, tend, tendon, tendonitis, tendons, tennis, tenosynovitus, tens, terms, terrible, terribly, terrified, test, tested, testing, tests, textbook, tfcc, tfcc procedure, thearpy, theoretically, therapist, therapy, thick, thicker, third, thirdly, thirteen, three, thrilled, through, throughout, throwing, thrown, thru, thumb, thumbs, tibia, tibial osteotomies, tibias, tight, til, till, time, time, times, times, tingling, tip, tips, tired, tirred, tissue, titled, to, to, today, toe, toed, toes, toes.. top, topic, tops, torn, touch, tough, towards, trace, track, trained, 'trainees', training, traits, transference, translate, transmitting, trauma, traveled, travelling, tray, trazodone, treat, treated, treating, treatment, treatments, treats, tremble, tremendous, tremendously, trials, triangular, trick, trimming, trip, trips, trivial, trouble, tub, tumor, tunnel, , turn, turned, turning, turns, twelve, twenty, twice, twin, twins, twist, twisted, twisting, two, tylenol, type, types, typewriters, typing, typist, u, uk, , uk/~belcher/tfcc, uk/dysch, ulna, ulnar, ulnarcarpal, ulnas, ultimate, ultimately, umbilical, unable, unbearable, unbearably, uncle, uncomfortable, under, undercurrent, undergone, underside, undersides, understand, understanding, uneven, unfortunate, unfortunately, unfortunatly, unique, uniqueness, united, unla, unless, unnecessary, unsound, unsupported, until, untroubled, unusual, unusually, up, up, update, upper, ups, upset, upside, ur, urgent, us, usa, usage, use, useage, used, useful, useless, using, usual, usually, uterine, utilize, v, valinda, valley, vara, various, vengeance, version, versus, vertical, very, veteran, via, visible, visit, visited, voice, volleyball, volleyball, w, w/, wait, 'wait, waiting, waitress, wake, waking, walk, walk-by, walking, wall, wanna, want, wanted, wants, war, warm, was, wasn't, wasp, watch, watches, water, water-ski, way, way, ways, wd, we, weak, weakness, weakness', wear, wearing, weather, web, webpage, web-page, website, website, web-site, wedging, week, weeks, weigh, weight, weights, weill, -weill, weird, welcome, weld, well, well, wellbeing, went, were, we're, wet, what, what, what, whatever, what's, wheelchair, when, where, whether, which, while, whiplash, white, who, whole, whom, who've, why, why, wide, wife, will, willing, win, wise, wish, wists/, witch, with, within, without, wobbly, woke, woman, women, wonder, wondered, wonderful, wondering, won't, wood, word, words, wore, work, work, worked, workforce, working, working, workload, workman's, world, worried, worries, worry, worse, worse, worsen, worsened, worsens, worst, worst, worth, would, wouldnt, wouldn't, wow, wrapped, wrestling, wrist, wrist/forearms, wrist, wristbands, wrists, wrists, wrist's, wrists, write, writing, writst, written, wrong, wrote, wrsit, x, xray, x-ray, x-rayed, xrays, x-rays, x-ray's, x-rays, , -xxx-, year, yearly, year-old, years, yes, yesterday, yet, yikes, you, you, you'd, young, younger, youngest, your, you're, yours, yourself, you've, yr, yrs, yugoslavia, zealand,
ANYONE FINDING KEYWORDS HIGHLIGHTED IN THIS LIST
between comment tags - they are condensed keywords from the
year files
dysch2001.htm
dysch2002.htm
dysch2003.htm
dysch2004.htm
dysch2005.htm
Madelung
Deformity. embarassed short arms
recommended doctor who specializes
tentative 'diagnosis' MWD DCS
physical appearence, information physical
appearence Cortozone
injections ( Trauma induced )
grandfather apparently my
appearence is much more noticable.
madelungs deformity significant change
pain every day
didnt realise really
apprehensive Ilazorov
frame advice or
contribution appointment discuss different types of operations
that have been tried before.
wretched deformity.
surgery was not the way to go. best surgeon ulna nob the bone
(wrist to elbow) to protect the bone. This arm responded
gets sore but the pain wrist nob. The wrist
can now flex.
surgeries
First surgery massive bone plate didn't stay attached.
pelvis
bone new plate installed.
come loose
Cannot lift fingers like being in a
fist position and middle 2 fingers will not straighten out.
remove the plate, take a tendon reconnect the tendon.
tendon to those fingers
ruptured due to riding over the plate
"the looks of the arm."
"just a little piece"
of the pelvis or hipbone.
arm was very bowed and the bowed bone
look better? a severe case.
shape influence
such a difficult decision... lived in casts
The casts go fingers to shoulder.
great grandmother protruded bone at her wrist.
aunt remembered
women were very short and had the heavy wrists.
unknown shared common ancestor great great-grandmother
good condition surgeries on my arms.
grandmother's Mom and
Grandmother Grandma's Mom stuck a needle into the bone to drain the fluid.
great-aunt, protruding bone s a slight curvature. curvatures.
discuss my arm looking at my arms. cannot be fixed. acknowledge my arms
were
different.
show them your arms." Mom or g-mom's arms. arms hurt.
grand-daughter has the protruding bone, but no pain or curvature.
size of others wrists have very heavy wrists and big hands.
- removed the plate.
- shaved down the ulna bone.
- the ruptured tendons could be repaired, so....he reattached them to the fingers.
- he split the scar tissue in the wrist, tendon repair area, scar tissue
and never can come undone.
- next, he moved the wrist back in line as it was dropping down and attached it so maybe with luck it can't come loose and drop down again.
"reverse kleinert" splint.
angles have all changed. reconnect the severed tendons to my fingers, slowly stretch the tendons out and make the fingers work. raise my fingers up, just trying to lower them to the flat part of the cast. she molded the cast to me, then attached the arched bar across the top and started connecting the fingers into the little slings for each one.
ran into a problem when the little finger refused to stay in line. it tends to stray all over the place without my knowledge. roaming fingers! the therapist cast loose piece of cast below it. slings are a piece of suede lay flat on the cast.
reconnect the tendons
fingers as they had all ruptured. tendons to the fingers
bone mass in the wrist. anti-inflammatory called norgesic
medication, kidney failure tylenol 3's with codeine kidney specialist.
using pain killers and surgery. rapid decline.
orthopedic surgeon,
ulna bones back, nothing that can be done definite good
outcome. a growth hormone problem
x-rayed orthapedic surgeon not
finished growing, an Australian family history or short arm stature
being disabled vacuuming.
american female slightly nervous
hearing that i have a deformity mild carpal tunnel syndrome x-rays. my pain strength in my left wrist.
loss of strength overwhelming pain
t follow up appointment madelung's in my left hand. have bilateral
madelung's! pain came overusage
soft splint for my wrist comfortable to sleep in B-6 vitamins.
daughter's madelung Each generation has progressively worsened.
live with increased pain refuse to allow the pain to dictate my life.
range of motion is severely limited, , you improvise. good percentage
of positive results. physicians stopped growing- pop my wrists, wear
supports, etc. complete simple tasks. surgery despite pain, positive
feedback
dwarfed- geographical data. Norway. primarily frustrated
lack of options to fix my wrists, physically capable of, pain is a
side factor left hand is numb as I type. to be worsening (especially
in range of motion), more precautions not to overuse them. quitting my
display job. righthanded right hand is worse emedicine data
specialists for advice regresses by generation, progressively gotten
worse. scan bilateral talipes was diagnosed, very detailed scan a
relatively short femur.
paediatrician shortening of the long bones on both his arms and his legs. His wrists have a 'broken' look and the middle finger on his right hand appears to have a knuckle, unable to bend it.
consultant clinical genticist in plaster casts for treatment of the
talipes definately abnormal finding upper limbs
ulnar deviation of the hands at the wrists relative shortening of
the ulna in relation to the radius on both forearms. There was aloso
incurving of the little fingers - clinodactyly. light shortening of
the humeri, which are the bones in the arm between shoulder and elbow,
and femori, whch are the thighbones. shortening of the forearms more
noticeable in the unlae than in the radii."
long-term future age-group
husband was only diagnosed
doctors to listen to him. Leri Weil and Madelung along with
the short stature. run in his family the short stature, and the
Madelung
The blood results man's shox test Leri Weil and
Madelung along with the short stature.
high frequencies) was just a curse - all left-handed.
Madelungs' "straighten her wrist".
believes our deformity it is not
something to be discussed deformity throughout her body, and is very small for
her age and frail.
Husband of wheelchair-bound wife with arthritis-like problem really large wrist bones orthopedic dr for a shoulder problem.
I held my arms out.
called Madalins Deformity mother's family biological family history.
madalungs deformity. I feel powereless
bilateral madelung wrists gradually increased in size and the pain has been unbearable at times.
left is more abnormal
vein is so prominent anti inflamatories and pain killers Dihyracodine. a hand surgeon shortening the bone and putting in a plate or removing the bone. e removing the bone people suffering their wrist clicking which is more painful,
Madelungs
excrutiating pain daily.
growing pains.
surgery (hip bone)
back the motion l cause me pain.
stress damage and arthritis
elbows down. My fingers are
constantly swollen and my joints(fingers) are turning
purple.
diseases worse crippling pain
knees and back have always bothered me too.
symptoms are related gymnasts wrist deformity
similar symptoms
boney lump at the end of her ulna sticks
gymnastics large calves in proportion to our size. Does it sound to you that she might have it? Does every one who has it develop pain? will she be able to carry on with gymnastics,both imeadiatly before she sees the G.P. and repeated microtrauma Madelungs deformity
madelungs wrist deformity. sprained my wrist and x-rays experiencing severe pain
baby finger and shoot up to my elbow,
numbness in both hands, fumbling things and dropping things. y wrists were permanently dislocated. golfers elbow. Orthopedic Dr.
severe childhood injury
X-rays of the wrist e lack of ulna joint). , wear & tear
on a sub-optimal joint. The lag between trauma and condition
developed 'backwards', the radius stopped
growing prematurely (chipped growth plate we think) and the ulna continued
Ulna protruded severly 'simple' excision of the (distal) third of the ulna.
The floating bone fragment post-op
calcification,severed end of the ulna proper
range of motion post-op
wrist injury or wrist pain d tendonitis cortisol injections orthopedic
hand surgeon repeatative motion all day. ganglion cysts arthritis,
carpal tunnel syndrome - to over-worked wrists almost unbearable.
semi-fist position using my thumbs and point fingers.
. My spine feels bruised
massage therapy
experience such symptoms. Sweden e severe back pain as well ..
diagnosed with scoliosis of the spine orthopedic says .. Holland.
Dyschondrosteosis.
e I had Leri-weil.. Leri-weil,
I've got a family member getting pain.
cut the longer bone back straighten the bowed bone. visibly crooked
or bowed odd angle, pain in my arms and they are very weak. cannot
lift something dislocating my elbow. Neurofibromatosis. Misshapen bones
website address by my doctors.
carry out some research at the time,
breaking my arms and lengthening them
with metal rods. are a third shorter than everyone else.
or archived as it keeps disappearing "Kids with Madelung "
h no pain in my wrists
having short arms is: school - children are very
honest on what they see. Buying clothes, like jumpers,
shirts exercise and weight lifting family history, my older sister
Great Aunt, picture she had it in her legs
future children located the gene and can sup
remove it a lot of pain breaking the bones rods and stretching them straight.
both arms and both legs. a growth spurt lot of pain involved. He is
short for his age, sucess stories Leri-Weil pain anymore.
I have madelungs and I was curious to know if you would
I'd be willing to give you some constructive critisism, if you're
inclined
of a similar problem in Australia which was helped by
orthopedist
acts genetically addicted to Dihyracodine advised me not to discuss
it with my gp and has
arms are shorter bad feet with platfus (pes planus, flat foot )
bilateral wrist pain birth defect Both carry high risks both Madelungs
and dyschondrosteosis both my wrists were abnormal both wrists
brother shows some signs calcified since i have limited movement in
that wrist comes from my fathers side condition for years without
knowing I had it conducted both tests in the office consultation
correct diagnosis corrective surgery on my left arm coughing up blood
created a prosthetic daughter had weird shaped wrists deformed right
arm diagnosed as bilateral madelung wrists diagnosed at a young age
diagnosed prior to the onset of pain diagnosed with madelung
diagnosed with Madelung's Deformity of her left wrist dianosied
discuss my condition disenchanted and overwhelmed doctor had never
heard of the deformity doctor knows what to test me for does not want
to engage in any competitive sport doing typing at school even shorter
forearm experience with the ilizarov technique experiencing extreem
pain and discomfort in my anles extensive research on various genetic
wrist deformities family being normal height finally have a diagnosis
finger bones are fused For your information and individual research,
I wanted to let you know that Tyelonel for the pain in my wrists, local health center,
diagnosed as tendinitis... Physicians Assistant second opinion, soo persistant (stubborn?)...my
right wrist was and still is worse than my left. corrective surgery
performed on my right wrist when I was 16 years old.
50/50 chance of the surgery
Mobility and rotation did improve, cut off the end of my
Ulna, far outgrew my Radius, twisted causing a severe V trench, metacarpals
were getting "crunched" in. An arthography test breakage of cartilage, but wrist
brace..
tendons and ligaments pain killers/medication, ibriprofin severely wrenched for some
bayonet type of MWD, fat forearm. protruding Ulna I am also very short (5 foot, 1 inch), very short limbs, .a wide nose. :-) good
hearing, hearing test
"pidgeon-toed" feet. wear braces as a baby,
knee and back
problems. bones are thick and akward, y stocky, and my joints hurt
often.
unusually short Ulna. "preventative maintenance" madelungs deformity in
the wrist, gymnast didn't heal properly,
small
for her age measured with all joints measuring
different, growth hormone growth a boost,severe problems with her knees,
hyperextended knees physio.
Modelung deformity and leri Weill syndrome DNA (SHOX) test, deformity by Ultra Sound pregnancy? Adult Idiopathic Scoliosis multiple surgeries, fusions with
hardware and reconstructions and revisions NYC Orthopedic Doctor hand
Specialist wrist arthogram impacted ulnar. genetic bone deformity as my scoliosis
My knees are lacking cartilage from the shifting of my spine
and hips and I have had several knee arthroscopy's.
Hand Specialist in
(called Darrah Procedure?)
screw,
rods, a cage at S-1, mesh between the two removed ribs, bone
dowels and heaven knows what else. carpal
tunnel or just arthritus, rare genetic bumped them.
Ulna was quite prominent.
bone
fused no movement in my wrist whatsoever.
Orthaepedic Specialist.
ganglions??
bilateral Madelung's deformity with a blocked supination
Operation: Osteotomy bone graft and T plate fixation left radius. Osteotomy
and six hole plate left ulna.
Incision: Longitudinal incision over the dorsal ulnar aspect of the left
ulna. Distal half of forearm. Second longitudinal incision on the
radio-palmar aspect of the distal third of the radius.
Prcedure: Through the dorsal incision the incision was carried down
between EDM and ECU. An osteotomy of the shaft of the ulna was performed
three inches from the ulna head. A one centimetre block of ulna was
removed.
Through the radial incision an osteotomy was performed about one inch
proximal to the radio-carpal joint. The dorsal cortex was kept in
continuity. An extension ostetomy was performed. Part of the excised
ulna block was fashioned into a wedge shape to provide a dorsi-flexion
osteotomy of about six millimetres on the palmar aspect wedged to fit into
the opening osteotomy. The osteotomy site was held with a T shaped plate
with two holes proximal to the osteotomy site and three holes in the
trnsverse part of the plate distally.
distal part of the ulna
palmar osteotomy effect. A six hole DCP
compression plate osteotomy site.
passive supination was to 60degrees and
pronation full. There was 70degrees of flexion and 70degrees of extension.
Tourniquet was let down, haemostasis obtained. Copious washout, closure
to fat and subcuticular to skin. Wounds were dressed and a forearm
plaster splint applied.
Indications: Madelung's deformity right wrist.
Operation: Right radial opening wedge osteotomy and shortening osteotomy of right ulna.
Procedure: Right upper limb exsanguinated tourniquet applied under general anaesthetic.
The ulna was approached along its subcataneous border and 6mm trapezoid removed such that slight flexion would be imparted to the ulna. The radius was then approached from the volar aspect through the bed of the FCR tendon. The pronator quadratus was lifted from the radial aspect of the radius to expose the proximal radius. A three hole T plate was the fixed to the bone in slight ulna angulation so that the deformity would be reduced on evetual fixation. Osteotomy was the performed at the radius leaving a dorsal-radial hinge and the bone jacked out 4mm at the ulna volar side using the graft from the ulna. Fixation was then completed using a six hole small fragment DCP on the ulna. Wounds closed in layers after haemostasis obtained with 2.0 Proline to the skin, standard dressing.
Interposition arthroplasty of right distal ulna.
Procedure: Under GA tourniquet control the previous incision was opened.
DCP plate, screws and a Kirschner wire were removed. Approximately 1cm
of the ulna was resected where the sudoarthrosis had reformed. The
flexor surface of the ulna was stripped of periosteum and this flap
folded over the proximal ulna through drill holes covering the bone end.
Extensor carpi ulnaris was clipped longitudinally, rolled to an anchovy
and secured to the distal portion of the ulan with drill holes with 4.0
Ticron and 3.0 Vicryl.
Assessment: Rotation then showed 70degrees of passive supination, full
pronation. The dorsal branch of the ulna nerve was identified and traced
distally. Haemostasis was achieved, the wounds were washed out with
saline and closure performed over a Redivac drain with 3.0 Vicryl.
"anchovy procedure" rolling up
of tendons as a spacer )
limestone
(calcium) beguile in blood very. children's health centre
I am anesthesiologist and pain specialist (Brasil). intra-uterine life, your Ultrasound present "shortning of long bones"
(umero femur ulna radio tibia peroneo) Your cariotic is 46,X,add(x) (p22.3) -
SHOX gen. The geneticist (ulnar desviation.....).
Denmark Growth hormones?
two half-siblings.
prominent distal ulna")lumps on my wrists,long sleeve shirts, anomally I
unacceptable protruding/prominent ulna ends, "ball-type" features (protruding ulna) cosmetic anomolies
corrective
surgery on my wrists,
personal experiences with
Madelung's Deformity. MD as a "symptom" of LW/DCS. carrying heavy
groceries) 'wrong' movements, layman's language?
geneticist. 50/ 50 chance of passing it on. bloods were taken for the DNA
and SHOX genes testing. worrried sick of passing this on. bones in his lower arm were reversed. lower arm too My wrist is big and painful reversed bone theory
fingers are starting to freeze up.
hands were very
crooked monster movie. hands became so bad. "funny wrists"
gunea pig technical jargon miscarrying endocrinologist that the Hodgkins ( which my sister also had)
and the Madulungs( which my mother also shows signs of) are linked in a
shox mutation.
IVF PGD
big calves! Florida. Madelungs
Deformity My arms
are noticably 2 different lengths. 3D x-rays. full mobility Canada Mexico
orthopedics surgeon
friend whom had similiar shaped wrists functionality is very good
genetic error good candidate for surgery gradually increased in size
grandparents are short, but not pathologically great surgeon guinea
pig hard to keep job because my wrist is constantly sore have had
anti inflamatories and pain killers but they are no use helped a
little bit but i still have problems Hi, my name is B_ from
Hi, my name is S _ from Sydney Australia. My 11 year old niece as just
been
homeopathy, as I am a trained homeopath huge decision to operate hurt
beyond description and take pain meds I am a 25 year old female who
has had
I am considering surgery I came across your site while browsing for
info recently. I like your site. I cannot lift things over 2 kg's
I could not turn my wrist palm up to throw under handed I do not feel
like an alien I drop lots of things I have just been (original contact
in mid 2004 )
I have never known exactly what is wrong or if there is a name for this
I noticed she has had chubby wrists from birth I thought you might want
the information for your site. If you have
I tried reading and understanding your article on DCSMWD but got lost
I want more info I would welcome some support i'm left handed also
immature skeletal system immediate famly impact her teen life In
short - at present we don't know of anyone else with MWD. increasingly
bothersome as I age I've just finished reading your site, I came upon
it in my search for a just been diagnosed with Madelung Deformity just
dx with this condition lack of expertise lack of knowledge I have
encountered thus far in the medical profession large calves and have
a stocky bone structure left hand is smaller than the right and her arm
is 2.5 cm shorter legs situation is also partly a deformity Leri Weill
is prevalent Leri Weill sufferers Leri Weill sufferers Leri Weill
syndrome Leri Weill syndrome and as a part of my Leri Weill, madelungs
deformity limited movement of both wrists vertically and horizontally
limited wrist movement Madelung appearance Madelung Deformity
madelung deformity with knobs on Madelungs Madelung's Deformity
Madelungs deformity since birth Madelung's Disease making a conscious
effort to use my left Manhattan manifestation Many Thanks for the
good Work you are doing.
medical jargon metal plate about 5 inches
attached to my ulna micro-surgery mimics the DRUJ (distal radio ulnar
joint) mother had this affliction movement tests movement was a
little odd My 8 year old daughter has
my arm hung by my side at an odd angle My daughter E, now 15, was
my elbow touching my side and my forearm facing upwards my left is
more abnormal My name is H - I am 33 years old and have had problems
with my wrist My parents didn't notice my
My wrists are so painful at the moment N1L,N1R, P1 and P2, although
they were not measured never go away and it can never be fixed never
noticed anything else abnormal New Mexico USA no pain associated with
her wrists normal activities not able to extend her arm fully with her
palm up not exactly a giant not make me much taller it would prevent
any pain not pathologically shorter not showing signs of further
growth nothing to worry about numb after prolonged use of hands off
sick for a month often wears
options ran out orthapedic surgeon's words Orthopadist Orthopaedist
orthopedic surgeon osteo arthritis and poly neuropathy in my legs and
arms paediatric orthapedic surgeons pain is tolerable pain would be
worse after sugery pains in my leg Pediatric Orthopedist perform a
genetic test physical signs of the abnormalities physician in NYC
prevent pain in Leri Weill producing more with this affliction
progression of the deformity between the 8-15 age period progressive
progressiveness of this deformity pure aesthetic reasons putting in a
plate or removing the bone questioning radiologist had heard of
Madelung Deformity radiology pictures on your site radiology
techincian also had never heard of the deformity recommend surgury
relatively short removing the bone reports of people suffering from
their wrist clicking reset the bone giving it a straighter appearance
and to make me
same problems scanned
see a hand surgeon in see even one person who had this self dianosed
myself severly in both wrists short arms and legs, but not excessively
so shortening the bone similarities between this woman's wrists and
my daughter's wrists situation has fully stabilized specialist about
my wrist as well due to pain ssa disability still not operated on
still remains in pain stomach problems from pain killers surgeon in
Kentucky Surveillance Specialist, Birth Defect Monitoring Division, _
Dept. of State Health Services, USA testimonies I have read on this
site Thak you so much for all the information on your web site. You've
put in so Thank you for your work on this site. My name is M and I am
from _ , New York. My daughter, who is 13 was recently diagnosed with
this deformity and surgery has been recommended by a
Thanks The 14yo daughter of a friend has just been diagnosed with
three surgeries on her arms tossing a ball back and forth treated with
growth hormone treatment treatment would prevent any discomfort as I
got older try to correct the problem unbearable at times various
skeletal deformities vein is so prominent very limited range of
motion very uneasy feeling virtually no use with my right wrist
visibly shorter (5feet)
Work carried out a work station assessment wrist area year later
my body rejected the plate
"wrist deformity". exact same wrists having pain in my wrists, on and off, since I
weird shape of my wrists deformity has gradually increased "just the
way it is" further medical help. pain in one of my thumbs and my little
finger. stress ball to strengthen my joints. The pain
started to spread throughout both of my hands. wondering if Madelungs can cause pain in finger joints? I keep
getting needle-like pain in my fingers and knuckles. Sometimes they feel a
bit hot and swollen. shorter than they should be measurements
your forearms should be in length compared to your upper arms?
weird looking wrists.
actual condition pain in my hands kept me awake last night. trouble gripping a
pen properly to write.
showing my wrists are disclocated. genetic disorder -genetic specialist.
orthopaedic doctor.
misaligned bones may be trapping a nerve complaining of a sore wrist diagnosed madelungs. As she suffers from a lot of pain and has limited
. Kapanje
procedure? linked to Turners Syndrome pre eclampsia breathing difficulties and the upper back pain, do you think either
quite small in stature dwarfism bilateral madelung's deformity degenerative
changes my bones to shorten it and "shaved" a bit
off the one that sticks up.hassle of always covering
my arms.
hand/wrist surgeon. stunted my
growth (I am 5'2") close in wrists and ankles. limited mobility (not being able to turn to look at a watch,
etc.), prescribed surgery to fix the problem. Pinned together and casted no physical therapy and I have multiple
scars and puffiness bewildered surgeon.
an
inflammatory drug - hereditary condition, pediatric orthos to get x-rayed. So far, my 9 year old
daughter appears my extended family.
both heads of the ulna removed n my dominant
arm. Range of motion has markedly decreased, with much more bony prominence
on underside of my arm. I often have dull aching in the whole joint,
very quick sharp pain, fleeting using the computer mouse for any length of
time. Fatigue sets in very quickly. X-rays deny presence of arthritis, EMGs
deny carpal tunnel and other nerve compression syndromes.
A local orthopedic "hand man" no appreciation of slow
progressive changes in past few years."crooked arms".. told she had rickets. (Boy, was that wrong!)
Leri-Weil Dyschondrosteosis, with pain but none of these seem to make
any difference. Daily tasks like washing, drying hair, washing dishes,
making meals and driving shortened the
outside bone petite side. leg bones appear to be
shaped funny.
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