Dyschondrosteosis and Madelung Wrist Deformity ( 2003 )


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Personal stories concerning MWD / DCS submitted to this site in year 2003


Start of year 2003


From S7 in the USA in e-m contact [ CL ] MWD
Thank goodness! I (female,2003)was so surprised to find your site last night. I was told over two years ago that I have Madelung's, after I injured my left wrist at work. I have never had and difficulties with my wrists before, and I don't have any of the "signs" of the deformity, (at least the knobby bone on the distal ulnar side of the wrist, in fact, I have none, something I have always found very strange) other than being of very short stature. The only recollection I have of any problems with my arms or wrists as a teen was when I was in 7th or 8th grade and was supposed to take a typing class. I cannot place my hands on the keyboard in the proper keyboard postion with out having my elbows sticking straight out, which irritated my typing teacher to no end. I remember my mom taking to some doctor who did exrays, and having been told that I was born with my elbows misaligned or something like that. They said surgery was an option to correct the problem, and my mother said no, that I did not need to go thru that. So life went on....no apparent difficulties, no pain or discomfort, no knowledge of anything wrong. Then on 9/2/00, as I was working in my classroom on Saturday morning (I now teach Kindergarten) I was lifting a box onto a high shelf, and the box began to fall. I was lucky enough to catch it with both hands, but my left hand took the brunt of the weight. I heard and felt a pop in my wrsit and felt immediate pain. So I went to the doctor, and was diagnosed with having a wrist sprain, since nothing came up on the exrays. With splinting and thearpy, it did not get better, so I was sent to a hand specialist, who sent me to have an MRI. It was then that I was told that I have Madelung's Deformity, and that the pains was being caused by a torn or perforated TFCC. The other part of my current diagnosis, ulnarcarpal impaction syndrome (in part caused by the previous TFCC tear ( Triangular Fibrocartilagenous Cartilage Complex ) [ H.J.C.R. Belcher page ] , in part caused by the madelung's). We tried therapy for several months but the pain did not get better,, so we finally decided to have a wrist arthroscopy done . Once that was done, I was pain free in about a month and a half. Again life went on....... Until this past August, when I all of a sudden started to have the same distal ulnar sided wrist pain on the left hand. So I return to the doc. Now, after three months of fighting with the state workman's compensation fund to try and reopen my case, it finally has been reopened, and I am scheduled for surgery on the 23rd of this month. Right now the doctor (although a bit reluctant as he is not sure what the outcome will be like on a person with madelung's) is going to do an ulnar shortening osteotomy. But the other doc that I saw for the second opinion is suggesting that that procedure be done along with something called the suave-kapandji (see above link for TFCC )procedure, it it's needed. It's all kind of scary, but I am willing to take these risks, because I know that I can't continue with this pain that I am currently feeling. I am sorry to make this so long, but I just really wanted to let you know the whole storyof how I discovered that I have this rare deformity, as you say that it is on your site, how it is affecting my life now. I would also like to be able to be in contact with other people who have the same type of issues and understand what I am going thru. Thanks so much for listening (reading). Sincerely, S

From M2 in the USA in e-m contact [ CL ] MWD and DCS
Hello Nigel, I (female,2003)was diagnosed with bilateral Madelung Wrist Deformity and Leri-Weill Dyschondrosteosis in 1985. I am not aware of any family members with MWD or LWD. I am an American female of Mexican ancestry, barely 5 feet tall, and will be 25 this year (2003). My father served in the military and as a dependant; I was first evaluated by military doctors. Their provisional diagnosis was metaphyseal dysplasia and Blount's disease from my bowleggedness (bilateral tibia vara), but they did not know. Doctors wanted to perform surgery (bilateral tibial osteotomies) in an attempt to make my legs straight, but only felt there was a 50/50 chance of a successful surgery. So, my parents sought additional opinions and evaluations. We were referred to several orthopedic and endocrinology specialists at - - - - , the - - - -, and - - -. Doctors noted hypoplastic and dislocated radial heads with bowed radii, wedging of the carpal bones between the radii and ulnas, dysplasia, and medial beaking of the proximal tibias. My forearms, tibias, and the 4th and 5th metacarpals of the hand are also shortened. I was then diagnosed with LWD and MWD when I was 7 years old. Finally specialists told us surgery was not necessary unless my legs progressively bowed as I matured. Their worst case scenario was that my legs would bow to the point where my walking would be impaired. I have been blessed to live a relatively "normal" life. I was even a cheerleader throughout high school. My parents were worried about me breaking a limb while performing stunts, but I promised to be careful and pleaded with them to let me try it after doctors cleared it. Pushups are uncomfortable, but thankfully, I live with almost no pain. Sometimes I experience discomfort in my wrists most likely because I spend the majority of my Systems Analyst job and free time on the computer. I used to have some trouble carrying heavy items, but strength training regularly has helped tremendously. My biggest dilemma is probably clothes shopping. My calves are large, so pants and boots often do not fit properly. Pant legs and shirt sleeves are always require hemming. Luckily, I usually wear shorts and short sleeved shirts since it is rather warm in - . The last time I went to an orthopedic specialist was in 1991. I was 13 and wanted to investigate stimulating my bone growth, but discovered there was not any new information related to my short stature. Now I would like to learn more because although the risk of transmitting the disorder from affected parent to offspring is 50% for each pregnancy; SHOX gene defect research is on-going and I want to keep abreast of new findings. Please add me to your e-mail circulation list; I would like to hear from the twins with an update since their surgery. Kind Regards, M

From Dot
Many thanks for your tip about opening jam jars. I've told 2 fellow arthritis sufferers about it. I use the water left in the bottom of the kettle after boiling. I place the jar upside down in a small bowl ,pour in the hot water and wait a minute before opening.

From A in Canada in e-m contact [ CL ] MWD
I have found your site very interesting. I am 39 (female,2003) and have lived with Madelungs deformity since I could remember. I have had 3 surgeries on my left wrist and recently had surgery on my right . Daily tasks have been a struggle since I am right handed. I would really like to get in contact with some of the wonderful people that have written to you. Pls feel free to give out my address. Thanks again for your great site, I have already found great information on it and look forward to further information.
Followup - Yes , there is a history of this in our family. My father is turning 65 this year and he has had a bump on his wrist for a long time. My father has never suffered with pain though and has never had surgery on it either. On the other hand, my aunt who used to live in Europe ( may still ) has had this deformity for a long time. I don't know the family history of it because most of my fathers family lived in Yugoslavia and after the war alot of things got lost or misplaced. So far, my 2 younger siblings do not have this awlful deformity.( thank God). I do have some old pictures of my family and in those pictures I noticed that one of my aunts had very short arms. ( Like me) They were above her hips and she was a very tall women. I couldn't tell you if any of them have ever had surgery though. Nigel...have alot of people ever asked you if this Deformity is recognized as a disability.? I am in the process of seeking some Government assistance to retrain myself since the last great paying job I had, before the last surgery, I will no longer be able to do. I will keep you informed , if you'd like. Thanks again for your great site. One person has already contacted me and will be going for surgery soon. I hope that I can help her somehow.
I'm sending this quick note to you to maybe help other people in Canada with this Deformity incase they inquire. Well.....with the help of the Surgeon, I submitted to our Government a form that allows me to make an extra $70000.00 a year tax free. You can only qualify for this tax break if you cannot feed or dress yourself. Now that the Surgeon filled out that form, my next step is to see if the Canadian Government will help me get retrained so that I may return to the workforce
Followup 2
Since I wrote last, I received correspondence from the Canadian Taxation Dept., that I indeed am eligable for the tax break due to the severity of my deformity and the inability to properly feed and/or dress myself. This is great news !!!!!! I can actually hire people now to cut my lawn and shovel the snow !! I would also like to mention, that my battle is just half over. !! I am also trying to get the Canadian Gov't to acknowledge that I have a "disability ". It was hard enough realizing it myself. I have always been very athletic and physical. Despite being rejected once..I will continue to dispute my claim and demand that they at least see the severity of my case. Now that the Tax Dept has acknowledged my disability.....I'll have to send the Disability Dept my correspondence. Boy are they mixed up !!!!!
followup April 2007
Its great to see that your web site is still helping those in need with MWD. I just wanted to update your readers on my condition. Since my last surgery (2000), I won a difficult court battle with the Federal Government pertaining to MWD. It was a 2 year battle but well worth it in the end. I was granted a monthly disability pension. Needless to say, this deformity has no mercy......and I will be having my 4th, and hopefully, final surgery on my left wrist.

From T in the USA in e-m contact [ CL ] MWD
Dear Nigel, Thank you for putting together this very informative website. I am a 40 yr old Mexican female(2003), and was diagnosed with MWD in my early 20's. Initially, the hand and wrist specialists could offer nothing more than the option to fuse my wrists. I declined and went about managing the occasional pain with massage and accupuncture therapy. I rock climb, bike ride and lead a very active lifestyle. Other than looking a little weird, this condition did not start to affect my wrist mobility until recently. I am interested in finding an orthopedic surgeon in the States who has experience in treating this deformity. I just read a letter from a woman who had surgery in the US and am wondering if you know how I can contact her. Her letter was titled: From A2 in the USA in e-m contact [ CL ] MWD Please Nigel, if you have her information and/or information about US based doctors who can help correct this deformity, I would greatly appreciate your sending me this information. Thank you, T
I will be travelling to the state of - , Mexico to meet my birth father and other family members on my mothers side. It appears that its on my mother's side of the family. Two of my sisters may have a slight case, but nothing as noticible as mine. I plan to inquire around the family to see who else may have this and will send you the results. My mother's family has been in the same geographical area for many, many generations. We are primarily native meso-americans with the unfortunate infiltration of the Spanish genes. I will certainly know more after this trip and will report my findings back to you. I can't begin to tell you how many times I have been misdiagnosed...its such a comfort to know that there are others out there that share similar stories. Thank you so much for creating and maintaining this site
Followup - I spoke with my mother at length about this. She had always been told that we were simply "double-jointed". She had no idea that this was an actual deformity. However, keep in mind that she was raised in a very rural area, and probably did not see a doctor until she came to the states in her mid-20's. Well, it appears that almost all of the women in her immediate family have Madelungs. There is also a cousin on her mother's side who was only 4 foot in height!

From K4 in the USA in e-m contact [ CL ] MWD
hi, i'm 25 (female,2003) from - , USA, and today i found out the name form my misshappen wrists: Madelung's. I have had pain in my wrists, especially the left wrist, since i was at least 12. i complained about it to my mother, and as my ulna started to protrude and kids would tease me at school, she was concerned. then, i had a ganglion cyst develop between the radius and ulna on my writst when i was 15, and the doctor drained it and said my funny wrist was from a fracture to the growth plate. but i had never broke any bones or hurt myself, so i never was convinced about his (lack of) diagnosis, which left me no options but to deal with it. i have had pain more severely over the last 2 years, which i imagine is because i use my hands so much at work and in my art making. not only in my left wrist, but also my hips, knees (to the point of limping), ankles, toes, and fingers. the left side of my body usually hurts the most. i went to an orthopedic 1 1/2 years ago to check everything but my wrists ( he wasn't the hand specialist) and i was tested for arthritis, but it was negative. he could not explain my pain, but i noticed when i stood less at work ( i am on my feet a lot) it wasn't so bad. so i thought maybe i needed better shoes, or something to ease the strain of standing so much. anyway, the doc said i had "weird" ankles. no explaination for this- they appeared to function properly but be odly formed. he and his intern were very intrigued, but nothing came of it. so today i went to a hand specialist, finally, as i feel a long bout of pain coming on (it usually lasts a couple months). she said right away i had Madelung's disease, gave me a splint to try and said surgery is a last resort. I came home and did some research and found your site. can you answer any ?'s for me: 1) is madelung's "wrist deformity" a manifestation of "madelung's disease"? I found disturbing pictures of the middle age people suffering from it, but it seems related to fat deposits on the body. 2) what relation does Madelung's wrist deformiy have to my ankles? has anyone else experienced pain in other joints or just their wrists? i was wondering if the improper formation of my Madelung's wrists parrallels other weak joints in my body. Today, with the small bit of information i have found, i have found the answers to so many questions i've had about my body! i always had tremendous trouble with my left hand, trying to play music (piano, guitar, bass) and sports. if, like i think, my "deformity" or "disease" is not limited to my wrists, it will explain why, no matter how much exercise and training i did at school, my body's joints would hurt so much from soccer, track, and volleyball! thank you for your informative website!
update 2005 i first realized there was something wrong with my wrists when i was a teenager, but now i have also had problems with my ankles and hips, especially those on my left side which is the wrist that is most misshapen. the doctors i have seen have not been very helpful: some don't know what madelung's is, and though there are a few procedures that have been used to "help" they do not cure the problem. i have read accounts of people having 5 or 6 surgeries and still in pain. for my ankles/hips i have started wearing very supportive shoes. they are expensive, but dankso clogs are very good to me. i also have clarks that are good support. ibuprofen sometimes helps to dull the pain but not always, and i don't want to destroy my liver before i turn 30 so i am being careful... also, for my wirsts i have noticed it is best to avoid grasping heavy things, or awkward items where i can't get a good grip. i used to do a lot of detail work at my job with my hands and can't do that anymore because they ache so much when i go home. sometimes a "massage" under warm running water fells really good when the joints are aching. soap kind of works like a massage oil would, at least to rub down aching arms and ankles in the shower.

From A2 in Canada in e-m contact [ CL ] MWD and DCS
I (female,2003) am a 61 year old veteran of Madelungs Deformity. severe case in lower arms and wrists. I was in shock when I saw the e-mails from the others on your site. thought I was the only one alive with this deformity. I will write a letter about me in the next couple of days. I am living in Canada but was born in the U.S.A. I didn't see any letters from people my age...maybe I was the only one. hahaha later....

Hi Imagine, I once again checked the internet and here were all of these letters from fellow M.D. sufferers. Most letters seem to be from people in their 20's and 30's and I guess that must make me one of the real dinosaurs...I am 61 years old and was born with M.D. There was no one to talk to in my day. I had a badly bowed left arm with no strength in the wrist as the hand was almost on backwards. The right arm was slightly bowed and I had the bone protruding from the wrist. when I was 13, a Specialist diagnosed me with severe Madelung’s Deformity. Now it had a name....but no one knew anything about it. I used to watch others to see how to carry my arms as much like them as I could. I would go home and practice in front of a mirror. It meant carrying my arms backwards as the undersides of the arms were more "normal" looking. I learned very young when kids questioned my arms, I would show them all the stuff I could do with my arms that they couldn't. they were impressed and I was a hit. Teachers were the worst. piano teacher...you could reach the keys better if you would straighten out your arms. 8th grade home ec. teacher when we were studying food and bones.... - is a good example... she has had scurvy, (lack of proper food)...I was horrified. My gym teacher in high school... if you would straighten out your arms you could touch your toes…followed with a swat on the back of my arms. A typing teacher who always said ...you could type much better with your arms straight. NO KIDDING!! these were educated teachers! now tell me, how many people can bow their arms to annoy teachers! I was miss-diagnosed my senior year of high school with a broken lunate (sp) bone in my right wrist. I had fallen and it landed under me and my wrist was sore. I wore a cast for 6 weeks and then they x-rayed and discovered the bone still looked just the same. That was just the way the bone was.

I was the second fastest in my typing class at school (manual machine). I may have looked silly with my arms way up in the air, but I was good. I learned to carry things (including old fashioned manual typewriters) on my right hip. I raised two kids on that same right hip. Worked for years to an early pension at 55.

I had all the common problems...wrists out of joint, weak wrists, immeasurable pain, arms to short, but...I was heavy on pride. I never said no when I was asked to lift something heavy, play volleyball (yikes...I can still feel that pain from high school!) I never let the pain win...

I always found a way, no one ever knew the pain I was living with. I don't remember ever missing out on anything in my whole life because of my restrictions.

By the time I was in my 50's, my wrists and hands were becoming very stiff and the pain had worsened. At 55 I was offered an early retirement due to cuts in government positions. I was just old enough for the early pension and jumped at it. My hands were becoming almost useless. A couple of years later I couldn't even write my name anymore. Over the years I managed to break my left elbow and it left my arm stiff. This ended up being a blessing as now with the stiff arm I could carry things again, I knew it couldn't give out on me.

By the time I was 58, my hands were turning outward…just like they were going back to meet my arms. I lost the movement in my wrists and went to my doctor and told him I knew they couldn't do much for me, but was there anyone who might be able to make my life a little easier. he sent me to a Bone Specialist....guess what! He knew about my deformity. He told me he thought he could operate and at least remove the pain. My first positive came at the age of 59!

I then applied for the disability pension offered by the government. Needless to say that was a battle to the end. It took me over a year to win. You can get disability...just don't give up. My surgeon wrote them a letter and I wrote them a letter telling them I was quite sure the person on their board with “medical expertise” had no expertise on my condition. They cancelled the hearing and gave me my pension back to when I first applied.

In December 2000, my surgeon was ready to operate, we went for the surgery. First the right arm. he wanted to take a piece of my hipbone and weld it in my arm. I didn't want this as there isn't much left of my hipbones. Instead he put in a plate and removed the bone that protruded from my right wrist. I was in casts for 6 weeks. the cast was changed almost every week. Starting with a full arm cast to a cast hinged at the elbow so I could use the arm and then to a cast from the hand to the elbow, and finally a half cast for sleeping. I was in physiotherapy for about a year. The pain is totally gone...I do have days when it is stiff...then I don't use it anymore than necessary. It is perfect other than the middle finger is droopy. This is a new pesky but not serious problem considering where I have been.

Now that the arm, wrist and hand were working well, we went for the left one, one year after the right, the left one was done. I again said no to putting the hipbone into the arm, so he did it with a plate and pins just like the right one. My 2 arms didn’t have a lot in common…after 2 months in casts, the pins wouldn’t hold the plate to the bone. In November 2002 the plate was removed and a piece of bone from my hip was added to my arm. (yet another problem, I couldn’t walk for about 2 weeks because of the pain in my hip…took months to get back to walking correctly.)

The surgery went well. Wore the casts again for more than two months. This time no Physiotherapy…let the arm advance at it’s own speed. My last cast was removed in January, 2003. This arm will never work as well as the other one. It was so badly bowed to begin with. Partly because the old broken elbow keeps it from lying flat, sort of on it’s side. The “out of joint” pain is still there but only occasionally. I haven’t much control over the fingers yet. When I straighten out my hand the fingers go every which way. I can live with these arms. I call them my 2 miracles. I don’t know that I will ever be able to type again with my left hand, but I get along just fine with 1 finger.

(corrective surgical procedures "Distal Radial Reconstruction" and "Complex Radial Osteotomy" ) I will be seeing my surgeon again in 2 weeks. I’m sure he will be pleased….I am. I have an added bonus….my arms are very close to straight…I never dreamt this could happen to me.

There are a few things the younger people should be aware of to save them from bigger problems when they become my age.

1. First of all, I had way to much pride to let people help me over the years. I went through so much unnecessary pain because I insisted on doing everything myself. Make life easier…. let others help. I do now and they enjoy doing the few things I allow them do. I still find it hard to ask for help…DO IT!!!

2. Don’t use your hips to carry heavy things….it just isn’t necessary! Let someone else do it. My hipbones are sore and thin now.

3. Don’t use your shoulders as extensions to your short arms…my shoulders are very painful. (They look as Nigel’s do in his picture.) Keep your shoulders back. Wanna reach something high? Ask someone to reach it!

4. If your arms are quite short like mine, surround yourself with pillows. Whatever kind it takes to be comfortable so you can rest your elbows. Don’t let your arms hang unsupported. Even away from home, take a nice pillow along and put it in your lap…purses work too if they are big enough! Just rest your elbow on it and the other arm over the top.

5. Posture…think about how you sit and stand. Rather than standing on both feet, I always rocked from one to the other, don’t do that! Stand up straight on both feet. Sitting…sit up straight. I have always slid down so my elbows could touch the chair arms or rest on my lap. I never sit up straight and now my back is bad. I have a picture of me in second grade, I am sitting and it appears my chin is trying to meet my knees.

It has affected my ankles although I haven’t been diagnosed. Never seemed important enough as I walk fine just have a very hard time getting on boots…just not made for a curved ankle bone. I decided at a very young age, before they knew what I had, I had 2 choices…either make the best of it or sit around and pout. Make the best of it…makes life much easier. Now I don’t mind slowing down…time to relax.

Yes, my Mom had it too. She had the protruding bone in her wrist and weak wrists. No bowed bones. In fact, she wasn’t diagnosed until she was in her 50’s.

i just had an idea, acted on it and for me it is brilliant. maybe it can help some of the rest of you also. have you ever heard of a boppy pillow? a company called jolly jumper (probably others do to) makes them and i ordered one through the sears mail order. actually they are made for mothers who nurse their babies. i haven't seen one in many years and they sure never had these when i was that age, but, it jumped into my head the other day. they are a semi-circle pillow. they go across the front and sides of the person when seated. mine is actually more squared off rather than round. they are about 6 inches thick and the top surface is flat. my arms are so short and the older i get the more uncomfortable it is to not have anything to rest my elbows and forearms on when sitting and relaxing. this is perfect. i worked with it and for me i push the sides down to where my elbows are comfortable and raise the front to rest my forearms on. i have always piled pillows around me but they always just slide away. you could also level the front and use it as a table to write or whatever. give it a shot...you will be surprised! hope it works for lots of you.

From A3 in Holland in e-m contact [ CL ] MWD
Hello, I (female,2003) am 27 years old, dutch and i know now since 3 years that i have Madelung deformity. Can you help me with any information in Dutch or do you have a Dutch website or email from someone who has more information? I come from - , Holland. Thank you,

From A3 in the USA in e-m contact MWD
Hello Nigel, My name is A (male), and I live in the U.S. I have recently made the self diagnosis of Madelungs. I am not even quite sure on the pronunciation of the word. Anyhow, I am 21 years old (2003) and have noticed my odd shaped wrist since I was about 14. I didn't think much of it at first, but the shear odity of the deformity has created quite a complex for me. And, that is not to mention pain. I have always been a very active teen and young adult. My alltime favorite sport (skateboarding) has probably intensified my problems. I have never actually broke either wrist, but I have sprained them plentey of time. In fact, my right wrist is a bit sprained now. This is quite the neuscense of a problems. At my job, I am a computer specialist, and typing can be a bit painful. I don't know much else about the disorder, or even who I can contact. I would like to see a physician for a formal diagnosis, but where can I find that? And, even if I do, can they really do anything about it. Are there surgeries available. Is there a specialist in the world with a lot of experience with MWD? . Is there anything you would like to tell me. My e-mail adress is - . Please feel free to contact me. I would me happy to exchange info about our condition. P.S. I am quite sure that what I suffer from is indeed Madelungs. My wrist have the exact sam "bayonet" look to them. The wrist bone on the thumb side sticks out something terrible. It is not a pretty site, yet cosmetics are not my ultimate concern - although I tend to want to hide them... Thank you much for your time,

From M in Norway in e-m contact MWD
Dear Nigel. My name is M. - , I am 28 years old (female,2003) and I'm from - in Norway. I would like to thank you for this site, it has been very helpful to understand my diagnose. I was diagnosed with Madelungs deformity six months ago. My wrists look nearly normal. I have never had any pain or other problems with my wrists when I was younger. It started to hurt about five years ago. The pain is getting worse. I often have to take painkillers to get through the day. My doctor has sent my papers and x-rays to - in - . He did that seven months ago and I still haven't heard anything. I hope I can get surgery because the pains keep getting worse. I am not aware of anyone else in my family with madelungs. Keep up the good work with this page!
Followup
I would like to be taken of your mailing list. I have been to see the specialist in Oslo who told me that I dont have MWD (maybe a little hint of it....) M

From D3 in the USA in e-m contact MWD
am 43 (female,2003)and have been diagnosed with madelungs in both wrists since the age of 10. My parents bought me a watch and it wouldn't fit. No one else in the family has this condtion. My father was in the AirForce so we went to _ _ in _ for the diagnosis. The Drs were all puzzled and claimed at the time maybe my parents swung me by my arms or someone pulled my arms to make them like this, then this older Dr came in and said Madlungs disease. The Dr. was amazed I had it in both wrists and took pictures to put in a medical journel. At the time I had no pain and just wasn't as coordinated as others. When I was 16 my range of motion was so limited we went to a AirForce hospital in _ and I had surgery on my left wrist. A Dr. _ did the surgery and after about 6 months of casts and therapy I had alot of movment I never had. We returned to the states without my right wrist being done and a Dr. here whom I thought knew what he was doing went in and chopped off the bone that jutted out. No extra movement no realignment of my muscles or anything. My insurance would not pay for anything else because they considered it cosmetic. found this site quite by accident. I am amazed that there is so many people suffering from this.I frequently have severe pain and nothing quite takes it away. I have 2 children 1 boy and 1 girl who have "normal" arms my granddaughter is 2 now and her arms have all the appearance of "normal" . I am 5'8" . My son is over 6 foot tall and my daughter is 5'4". I currently have a job that requires alot of computer entries and there are days I wake up with swollen fingers and wrists.I pack on Icyhot and go to work. Is there any relief out there? My email address is - . I am interested in all aspects of this disease . Thanks D

From M3 in the USA snail-mail MWD
My name is M( female),I am 49 years old (2003). I have Madelung deformity at birth. At age 14 I had surgery where my wrist was straightened more so . Bone surgery is very painful. It healed and i have had no problems sofar. My right arm (Madelung) has always had less strength ,and I cannot write with my right hand. I have been able to type,water-ski with double handles and white water rafting etc. Played piano I was young. While reading the info on people with various situations with Madelung ,I realised I have been fortunate in some ways. It has affected my self-esteem/ self image. Now ,I respect myself more so. Also I didn't read about anyone who had Madelung at birth. Do you know anyonme who was diagnosed with Madelung at birth?. I was born - - -,my parents were told that the umbilical cord was wrapped around my wrist and stunted the growth. They never told them about the genetic aspect of Madelung deformity,% to females,having other children with that possibility. I have 2 brothers neither has this. I found out that I had Madelung at age 41. Travelling I met a doctor,we had a conversation and he told me what this was and sent literature when I came home. I would like to correspond and meet someone who has what I have. I've always been curious all my life,I've never met anyone with Madelung. Please let me know by letter,anyone or info that would help me in this way.

(Editorial note: I have no structure for corresponding by telephone or snail-mail)

From L in New Zealand [ CL ] MWD
Hello. My daughter aged 12 has just been diagnosed with this condition in both wrists. Her specialists are discussing whether she should have surgery, or if we should 'wait and see' what happens. She suffers from pain on and off, usually when she has been writing or typing. I am concerned about how this condition will affect her as an adult, and whether surgery is something we should consider now. We live in New Zealand. I would appreciate any help or information you can give me. Regards, L

From M4 in the USA [ CL ] MWD
I m very grateful for your web site. I am a 41 year old female from - - , USA . My wrist have gotten progressively worse over the years although I have tried to stay active. I gave up on medical treatment options until last November because nothing that was prescribed did much good. I am scheduled for surgery on July 14th to correct my left wrist. The plan is to remove bone from my hip and put it into my arm to correct my radial bone. The closer the time comes, the more terrified I become of the procedure. Has anyone else had this done? What were their results, recovery, etc. I would love to know. My surgeon seems knowledgeable but not very communicative. I also have numbness in my hands but not carpul tunnel, will this surgery correct this? My surgeon does not seem to know? I would also like to know more about Leri -Weill Syndrome. From what I have read, I may have this. I have Morton Toe. Short forth toe on left side (Growth Plate did not make toe grow), hyper sensitivity to sound and to touch at times, Periodic periods of terrible migraines, fertility problems, short stature (4 feet ,11 inches) , knee problems. I do seem to be in proportion for my body structure which rules out dwarfism. I do not know if I have a family history because my father was an adopted child and now is deceased. I would be willing to participate in any study to find out more about my uniqueness if It meant I could finally get a name for whatever this condition I have. Please feel free to pass on my E-mail to anyone who would want to communicate with me or have information to exchange. It is great to not be alone.
Even today, my family treats my MD as a family embarrassment not to be discussed. Perhaps they feel it reflects on them. Some doctors are not much better. I actually had one tell me that I was architecturally unsound and if I was a building I would be condemned. So much for humor or a good bed side manner. I have also had a doctor refer to me as MD and not my name. My grandfather on my mothers side Probably had MD and my great grandmother probably had both MD and perhaps Leri-Weill Syndrome.

From F in Chile MWD
I am from Chile and my mom and my sister have MWD. Actually we do not know almost anything about the disease and I was not concerned as my mom told me it went only to women, actually I think my mom's grandmother (mother side) had it too. I am just married and I do not have MWD but my wife started with the inquiries about if our kids can have the possibility of MWD. I would really appreciate if you can give me your opinion regarding this and also which is the real impact of having MWD as my mom and sister are very short but the only deformation that they have is the wrist but I do not know if this can carry some other things i.e. being short. Looking forward to your answer. With my very best regards, F

From ? in England (NW) MWD + DCS
Telephone call via a medical contact. Husband ,age 27, of wife with serious ,fast onset MWD + DCS + RUS ,recently requiring wheelchair and not considered operable. Concerned about genetics and her 4 children. May recontact when he/she is internet anabled.

From N in the USA MWD + DCS
Hello Nigel! My name is N, I'm from the US, am 49 yrs old. I have Madelungs, and Leri-Weill's. I'm very happy to see all the emails you have rec'd and found it to be very encouraging to know there are so many people out there experienceing some of the same things I have! I really would love to be in contact with anyone else who has MD/LWD! I have struggled with this disease all my life, first really noticed when I burned my hands, went to the doc and he found my wrists to be "abnormal". (I live in the well known medical city with the prestigious "- -") so in 1966 the doctor has several photos taken of my short forarms, my wrists and overall short statue (am 4'11"). He had planned to publish these photos, but my father refused permission to do so. I knew my shortness was hereditary as my grandmother (father's mother) was short also. I've been told my great-great- grandmother was only 4'3" tall. Notheless, it did not prepare me for the emotional pain of never being the same as everyone else. (In high school) Of course, I overcame the emotional trauma but am still concerned as to the why of the constant pain I live in. I have been diagnosed with degenerative disc disease and well, I will try to list some of the problems I've had-surgeries include-both my wrists (they cut off my ulna bone, I thought that was why I had "popeye" arms!) I had cervical and uterine cancer (total Hysterectomy leaving left ovary) at age 30. Seems like after this surgery was when my physical problems worsen. I've had 2 back surgeries and last Dr. I saw was considering spinal fusion which I said a definite No to! I am on disability and have been unable to work for almost 12 years now, due to the chronic pain I live in. Needless to say, my life has been one of pain but I have strong faith in God so people rarely see my pain. In fact I'm one of those that everyone says"you're sick? you LOOK fine!" I try to presevere and hide my pain. I am also wondering if you know if this disease could be causing all the other problems I've been having? such as spinal, and in the past year I have been experiencing muscle pain and cramping in legs, chest, back and wrists, and extreme fatigue. Sounds like I have fibromyalgia? well, just so you know, am just wondering, I realize you can't diagnosis me, but curious as to whether you think they may be connected? I have no doctor diagnosis for Fibromyalgia, I get soooo tirred of seeing doctors. I'v had several spinal injections and injections on my hip. lately they're been injecting my sacrum. (ouch!) so am trying to stay away. I am on several medications- a muscle realaxer , high blood pressure medication, pain meds (perocet) trazodone, (to help me sleep, not working!) I would really like to not be on any meds.!! Well, I hope to hear form you and would love to be in contact with others and in a support group! thank you for your time! ~Blessings, N

From M2 in Australia [ CL ] MWD + DCS
I found complete disillusionment when I came across your site. I was 15 when told I had dyschondrosteosis and told I'd be in a wheelchair by the time I was 20. I never went back to the doctor again. I am now 24 and starting to get sore wrists (mainly my right), a sore shoulder (right) and lower back. I read through other peoples experiences but I cannot assertain what the future holds for me. I am in - - Australia and no one in my family has this, my mother was adopted so I cannot say if it is on her side of the family. When I look at diagrams and discriptions of madelung wrist deformity I see an image of my own wrists. Everyone in my family is over 6ft and i am only 158cm. My arm was put in plaster when i was young as the hospital thought I had "a really bad break" in my wrist. I am scared that i won't be able to lift things etc and have a general wellbeing as when i lift things now my arm feels weak and kind of floppy. I had severe arthritis in my fingers at age 14 which seems to have gone away slightly due to typing. I'm confused and scared at the pains i am beginning to feel. Alot of doctors put it down to excess weight and wish to not investigate any further. I am frustrated and scared.. please help. How can I find anyone to help me when i have to tell them what is wrong with me? - M

From L2 in the UK [ CL ] MWD + DCS
Original contact by telephone but as I've said before all the info I have is on this internet file/s anyway. Any contact with anyone in the [ CL ] circulation list has to be via email as I have no other mechanism involving telephone or snailmail.

Dear Nigel
I am so pleased at finding your web site as I am a woman of 36 from Scotland ( - ) I first found out that I had DCS & MWD when I was thirteen years old .I have three daughters and two of my children have got DCS & MWD my mothers got MWD but not DCS and my grandmother has MWD and not DCS out of us all I am the worst one I'm 4 feet 11 inches I have small legs and very short arms . I suffer a lot of pain in my left arm and a lot of pain in my legs I have pain in my left shoulder it is as though my bones are rubbing together. I have went to the doctor to ask if this is anything to do with my condition and they said I would be prone to arthritis. I would like to find out a bit more about my condition I don't know who to talk to about it I would also like to hear from anybody who has the same problems as myself.

From D in Australia [ CL ] MWD
hello, i would just like to tell you that im a 18 yr old female and ive been diagnosed with madulung sine i was 14. at first it felt like i had a sprained left wrist so i went to the doctors and had a xray. in 2 weeks i had seen a specialist and then sent to a professor at a hospital. i was then informed that i had madulung disorder. we then found out it was herited and that may father and grandfather had it. but it does not show rarely in males. we are all short with short arms and legs and we were tolded it was because of the disorder. within a month i was admitted to hospital. they had to take out a ligament that was between my two bones on my left wrist and then took a piece of my growth plate out of my wrist. the operation helped alot. before the operation i only had 40 percent useage of my left wrist now i have 66 percent. i am told now that since ive stopped growing i have the option of having another operation where they will brake both left hand bones to straighten them. but i have gotten ouver the embarrassment of it all. i am in the the study books that people learn about madulung as being one of the most suvere cases in australia. i hope you find this helpful and useful thank you

From E in the uk [ CL ] MWD
Dear Nigel I'm so glad I ( female ) found your website while searching the net. I was diagnosed as having a madelung appearance in my right wrist 10 years ago. I didn't know this was what was wrong. The hand specialist just said I had a misshapen bone in my wrist and my unla was too short. It wasn't until this summer when the pain became unbearable again and I lost some of the feeling down my thumb that I went back to the doctor's. I only went for anti-inflammatories and a letter in order to apply for a Disabled Students Allowance. It was the letter that the doctor wrote to the Student Awards Agency that informed me of what is actually wrong with my wrist. At last I know why I am in so much pain, that I'm not alone and that I'm not going crazy because my left wrist is getting sore now also. And best of all, I now am assured that I'm not a hypochondriac. I am basically looking for as much info and advice especially for when I get my appointment to assess my needs for the Disabled Student's Allowance. I have asked for a voice activated computer and a minidisk recorder for recording lectures. One thing I was wondering is that my feet have an extremely high instep and are very wide (shaped very much like a babies - almost as if they got bigger but never really matured into adult shaped feet). Buying shoes is my worst nightmare. Do you know if this might be at all connected? I wear an NHS issue wrist brace and wondered whether you know if this makes things better or worse. I'm not convinced either way, but it reminds me on occasion to be careful with my wrist and gives support when I have no option but to use it. As far as I know no members of my family have it. However, according to my Mum, she once took my brother to A & E with a suspected broken wrist. The doc took one look at it and said "Oh yes it's definitely broken, but we have to give you an x-ray first." When the X-ray came back there was no bone damag. So I'm beginning to wonder. My mum had bother with her wrists when she was younger. It was diagnosed as tenosynovitus. Maybe she was misdiagnosed too. It's hard to tell but some things are beginning to slot into place now. Anyway, thanks again for the website E
followup in 2007
After 4 years of attempting to get a full diagnosis for my wrist pain and having been told I have a madelung appearance, I saw a wrist specialist at _ _ General Hospital. He assures me that whatever is wrong with my wrists, it is not madelung deformity. There is some misalignment of the ulna and radius but it is not the same thing. I now have to have arthroscopies to get a full diagnosis and maybe to sort the problem out. I have been on your mailing list for 4 years now. Please can you remove me from the mailing list. Thanks for the help and support.

From A4 in the USA [ CL ] MWD
I ( female ) have a question that no one seems to know the answer to and i was hoping you could help me with this i have madelungs deformity and i want to be in the military they have disqualified me due to the chronic pain that i had when i was 12 years and younger i now experience no pain the more i use my hands the less problems i seem to have i have been researching madelungs for the last week and have found several studies on MD though the cases that i have found are much more severe than what i seem to have i do not consider myself disabled or not able to function around this problem i rarely even remember that i have it until someone says something about the size of my wrist I'm not ashamed of it nor do i believe that i need surgery to correct it some people that have MD i have found have an excessively large wrist and are bothered by it my wrist are rather large but not an extreme for witch i cant handle and i was hoping that you might be able to tell me how this could effect me or if it should keep me from the military i would appreciate hearing from you . My mother and younger sister also show signs of MD but have never been tested . thank you

An aside
Having just written this address yesterday inquiring about a manual for an old digital clock, you may find it odd that I'm now writing about Dyschondrosteosis and MWD. After reading with interest your page on the subject, I recall someone I knew in junior high school (grades 7-8 here in the U.S.A.) Although we were barely acquainted and I can not now remember ever having a conversation with him, the image of David Manning now sticks out in my mind as someone possibly afflicted with a disorder similar to dyschondrosteosis, mesomelia and Madelung. We both attended Grandview School which was a combined elementary and junior high school, Valinda. He was a rather peculiar physical specimen, being somewhat short in stature, and always stood with his elbows bent. One day in the P.E. (Physical Education) class which we shared, the students were instructed to perform pull-ups (a.k.a. chin-ups), in which one hangs by the hands from an overhead horizontal bar and by flexing the arms raises one's body until the chin is above the bar then drops back down until the arms are straight, repeating this process as often as possible until either a specific time has elapsed or unable to continue. The members of the class were mildly amused when it was discovered that both of David's elbows were physically incapable of straightening beyond about a 20-30 degree angle from straight. I believe that this may be an alternate manifestation of radio-ulnar length difference. Time has now clouded my memory as to whether David had unusually short or bowed lower legs or "Popeye"-type bulging (or short) forearms or odd wrists, since any of these would have been overshadowed by the far more obvious elbow deformity. David would now be 35 years of age, + or - about 2 years. Do you have any knowledge acquired in your obviously extensive research, of anyone with the dyschondrosteosis, mesomelia or Madelung disorders having this elbow problem? Or perhaps know of another named condition which fits this symptom?

From M5 in Canada, MWD + DCS
im not sure how secure the site is or if his is even where you supposed to send the storys and if its not i appologize.
i was dianosed with mwd+dcs about 2 weeks ago and have found your website very helpful. i am a 13 year old female who lives in canada. i have had wrist pain for a few years now and had limited movement for even longer (not very limited just a liltle). the doctor sent me for xrays and then sent me to a phisiotherepist with tendonitis and sent the xrays to a specialist. after a few weeks the report came back and it had said that i had fractured my growth plate but i had never hurt my arm so after taking more xrays the dr made a appointment with a orthopedic surgeon. once i got there the surgeon asked me to stand up so she could see how i was proportioned and then after about 3 more questions she told me that it was mwd and another long word. just like that she was able 2 tell me what a dr. a specialist and a phisiotherepist( who specializes in hands and feet) could not. i was impressed to say the least. she showed me the xrays and told me a litle bit about it. the surgeon then suggested a neoprene splint (unfortunatly we havent been able to find one yet). i was wondering if anyone has used one of these before and if it worked or not. she had also talked about a corrective operation once i stopped growing but didnt go into detail about it. that afternoon the surgeon had called back and told me that i also had DCS and had said that she had done a bit of research on the computer and would send us the information that she found (i assumed through snail mail but it hasnt arrived yet). she talked about a forum that sounded much like yours so i am very glad i found your site. i found it very interesting that it is hereditary because i am only 4'11" and my dad about 5'2" my grandmother is about 5' as well and so is her sister. i however am the first one to have any wrist pain but my dad has a little bit of limited movement and kind of self diagnosed himself through your website. i have a appointment for feb.25.04 and will hopefully find out then what actions will be taken. i have noticed that some people talk about the appearence of it and how out of place it looks. it might be like a different form of it that you have or something but i have never had a problem with the appearence of my wrist or short stature. i would really like to find out all i can about this deformaty and would like to be added to the email contact list. p.s. i play basketball and basically lead a normal life and this disorder hasent held me back in any way i even enjoy canoeing so for those of you that are worried for your children i wouldnt be it is just a way to be unique and there is nothing wrong with that

From H in the UK, MWD
I am contacting you on behalf of a non email enabled friend. Her name is H and her daughter (J, 12) has in the last 3 moths or so has been experiencing MWD symptoms in her left wrist and upper arm. A number of trips to their GP has recently culminated in the suggestion that it is Madelungs deformity and she is now awaiting an appointment to see a 'specialist' through the NHS. Currently she is being informed that no one in the UK (i.e. NHS) operate to correct this condition. In the meantime she and others including myself have been searching the net for further information on this condition. Accordingly I have stumbled on to your website which has been very informative on the subject. Helen is obviously very concerned by the pain and discomfort her daughter is experiencing at present and the rate of physical change in her daughters left wrist and arm. In the last 3 months this has been considerable (i.e. 3 moths ago there appeared to be no abnormality but now the knuckles of her small and index finger are being pulled into her hand, the ulna is protruding significantly and her left upper arm is significantly shorter, circa 1 inch, than the right). In reviewing your web site and related sites, much of the treatment (surgical or otherwise) for this condition appear to be USA centred and accordingly I would appreciate any details (what so ever) you are aware of for UK based experts treating this condition. Thank you for your assistance.

From S2 in Australia [ CL ] MWD
Firstly i would like to thank you for your site on mwd. Without your help i would never have found out as much about mwd, because you see i live in australia and every doctor i go to just looks at me with a blank look on his/her face. They have never seen anyone with wrists like mine. Now my dilema here is is that the older i get the more pain i'm in and the worst my wrists look. I wonder if you can help me with how i go about getting help. I really want to maybe get an operation on them, but i would firstly like to find out all about the operation and ho much it would cost.

Just a little bit of information about myself. I was born in hungary 1975. As far as we know, noone in my family has mwd. Although i don't know much about my fathers family. I have one brother, he's normal, and both my parents are normal. I am 148cm tall. We first noticed my wrist deformity around the age of 11, when we had tests done here in australia with no results.

Can you help me with this information or guide me to someone who can? I would like to once again thank you for all your help. I look forward to hearing from you. Yours sincerelly S.


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