This file updated October 2007
Should the location of this file change please use the keyword dcsmwd in a search engine to find it again
For the benefit of non-english readers there follows links to summaries of this file in foreign languages.
A summary of this file (English)
Un sommaire de ce dossier (French)
Een samenvatting van deze pagina (Dutch)
Eine Zusammenfassung dieser Datei (German)
Un resumen de este fichero (Spanish)
Um sumário desta lima (Portugese)
Sammanfattning av detta dokument (Swedish)
Un sommario di questo documento (Italian)
Et resume af denne fil/tekst (Danish)
סיכום של הקובץ הזה בעברית ( Hebrew )
Many years (1980s) ago 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.
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. Perhaps I could sometime arrange for an animated capture of this shot. 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.
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 (21 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, 157 people referred to on these files so rarity less than 1 in 1.8 million. Another possible interpretation for the USA rarity is it is a nation of much more ethnic diversity ie less inbred.
In the UK 83 people, so rarity less than 1 in 700,000 of the population
In Australia 21 people (plus the Sydney 12 ? ) so rarity less than 1 in 900,000 ( or perhaps 1 in 500,000 )
Canada 26 people, so rarity less than 1 in 1.2 million
New Zealand 4 people, so less than 1 in 1 million
12 people in Sweden so less than 1 in 800,000
8 in Denmark, so <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. 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. 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.
End of year 2000
This file was getting unwieldy so the following section, that was on this
file, is moved sideways to
Continuation of Personal
Stories submitted in year 2001
Continuation of Personal
Stories submitted in year 2002
Continuation of Personal
Stories submitted in year 2003
Continuation of Personal
Stories submitted in year 2004
Continuation of Personal
Stories submitted in year 2005
Continuation of Personal
Stories submitted in year 2006
Principal keywords and key phrases from these year files are condensed and placed in this file as metatext. If search engines indicate a word in this file that you cannot find then it will be in one of these year files in all probability.
Keywords and key-phrases relevant and irrelevant, that people have put in a searchengine and arrived at this file
Keywords and key-phrases, file 2
Start of year 2007
I found your website when I searched for "wrist deformity". I couldn't believe what I saw - pictures of people with the exact same wrists as me! I'm 25, female, and have been having pain in my wrists, on and off, since I was about 14/15. as far as I remember, the weird shape of my wrists was first pointed out to me by a friends father when I was around 10 years old. the deformity has gradually increased since then. I've not been diagnosed. I only ever sought treatment once, when I was about 16 and I went to a nurse who just put a bandage on it, not knowing what it could be. Since then the pain has come and gone and it's got to be "just the way it is" so I suppose that's why I never got further medical help... until now. I went to my doctor first with pain in one of my thumbs and my little finger. He said to just get a stress ball to strengthen my joints. The pain started to spread throughout both of my hands. Sometimes my wrists would be sore but at the moment I am experiencing most pain in my knuckles and finger joints. Can this be caused by Madelung's or could it be arthritis? I'm really worried that its rheumatoid arthritis! I went to my doctor again 2 weeks ago and showed him my wrists. I never thought to show him the first time! He immediately suggested I go for an x-ray. So I got the x-ray done on friday and I am now waiting for the results - should be 10-14 days. I'm just 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. I'm really worried because I'm only 25 and don't want to be crippled from arthritis - or anything! Anyway, I just wanted to thank you so much for your website. I really can't believe I now know what's wrong with my wrists! I'm 100% sure I have Madelung's, with or without proper diagnosis. If you want I can send you photos. Oh, as far as I know there is no history of it in my family - but I have no contact with my dad's side of the family so there may be there. I think my arms are shorter than they should be - maybe my legs too but not by much. I'm 5ft2 so I'm small but not abnormally so. Do you know what measurements your forearms should be in length compared to your upper arms? I did the N and P tests and in all of them I have the movements of madelung deformity. Like I say, I'm 100% certain I have it. It's amazing. All this time I just thought I had weird looking wrists. I had no idea it was an actual condition that other people had! Well, yeah, thanks for the website! The pain in my hands kept me awake last night. Today in uni (it was my first day back after xmas) I realised I am having trouble gripping a pen properly to write.
I am writing about my daughter who is 10 years old. She was diagnosed with madelungs about 6 months ago. She came home from scholl one day complaining of a sore wrist but couldn't remember hurting it, we took her to a and e where she had an x ray, we sat in the waiting room for hours whilst the staff tried to work out what was wrong with her wrist... no one there had seen wrist x rays like hers before. To cut a long story short we were refered to a specialist at the childrens hospital who diagnosed madelungs. As she suffers from a lot of pain and has limited movement in both arms she is awaiting surgery on both wrists... Kapanje procedure? I wondered if any one has experience of this procedure and its outcome.
Hi my name is J and my daughters name is _ I would be grateful for any information you can give us about the follwing: My daughter was diagnosed with this condition at 14 at the time I was told it is also linked to Turners Syndrome which thankfully she hasn't got. She has a two year old boy and had a normal pregnancy until the end when she developed pre eclampsia and had to deliver six weeks early. She is now pregnant again but this time is suffering with all sorts, she has tightening in her chest making it difficult to breathe, her heart races for no apparent reason, she has developed back pain in the upper part of her back and then the normal problems, morning sickness for the first twelve weeks, passing out due to anaemia, low blood sugar, urine infections the list goes on. She is 23 weeks pregnant at the moment. The thing that is worrying me the most is the breathing difficulties and the upper back pain, do you think either of these could be caused by her deformity? She is quite small around 4 foot 11 inches and she is 20 years old. Please could you let me know if you have heard from others who have had difficulty during pregnancy due to the deformity. We live in _ in the West Midlands. When my daughter was a baby she was quite small in stature and I remember getting most upset when my mother in law suggested she may have dwarfism as a relative on their side of the family was a dwarf, obviously after _ was diagnosed with madelungs and I have now been looking into it I think maybe this does have some relevance. I'm sure my daughter would also be interested in joining the site so that she can talk to others.
Hello,I am a 34 yr old female with bilateral madelung's deformity and am also 4"11 Thank you for the article I have read on the internet.It is one of the more concise articles I have found.It has taken doctors 20 yrs to diagnose this defomity.I suffer form terrible pain due to degenerative changes that have occured due to the deformity. Are there newer surgery options for the severe form that i have? Thank you, M_ Ga. U.S.A
Came across your web page and thought I would let you know I think I have Madelung's wrist deformity. I had my right wrist operated on when I was 17 (now 38). I think they broke one of my bones to shorten it and "shaved" a bit off the one that sticks up. The left wrist was never as bad, but it is very obviously misshapen. I didn't realise that this had a name or that anyone else suffered from it. I don't have any pain or weakness, just the hassle of always covering my arms. Is there anything corrective that can be done? Are there other people to contact? No one else in my family suffers from it to my knowledge. I have not been officially diagnosed, but an old GP of mine expressed interest a few years ago that she had 2 patients on her books with this deformity. I could not remember what she called it. Then a couple of years ago at a music festival I spotted a lady with the same wrists as me. I have no other symptoms or pain and I would like to join your support group. I originally looked up "wrist deformity" on google to try and find out what I had and to see if surgery had improved over the years. Clearly it hasn't.
Hola! Mi nombre es V....... soy una mujer de 25 años y me han diagnosticado la deformidad de Madelung (discondrosteosis) en ambas muñecas esta deformidad la he tenido dese que nací pero el pediatra nunca llego a fijarse... lo que pasa es que hasta hace poco tiempo no he tenido dolor pero si que esteticamente nunca me han gustado porque llaman la atención. Resulta que fui a mi medico y le pedí que me hiciera unas placas de las muñecas y me las hice. Resulta que cuando me las hice al cabo de un rato me llamaron porque el radiologo me queria ver las muñecas y yo no sabia el motivo, la sorpresa fue cuando fui a recoger los resultados y me dijeron que tenia una deformidad en las muñecas y que no sabian lo que era... Las placas las ha visto un médico traumatólogo y no me ha dado ningun tipo de explicación y ahora estoy a la espera de ir a otro médico. ¿Quisiera que me mandaras información sobre esta deformidad? y con el paso del tiempo que problemas puedo tener... También decir que soy la única de la familia. ¿Qué pruebas deben realizarme?
My name is L_, I am 39 and live in Ohio. I decided to search for some more info out of complete frustration and found your site - it brought me to tears to find out that there are others who have similar stories like mine. You are also wonderful for putting this site together - THANK YOU. When I was around 13 or so, my mother told my father she noticed my hand/wrist looked a little different. After a trip to the family doctor my family and I were sent to the next largest city to visit a specialist. He then referred me to another specialist, a hand/wrist surgeon. This doctor told us that this condition (whatever it was) had stunted my growth (I am 5'2") because growth begins to slow down when bones begin to close in wrists and ankles. He figured I would have been more like 5'6" or so. Anyway, he felt I would have substantial pain eventually and because of limited mobility (not being able to turn to look at a watch, etc.), prescribed surgery to fix the problem. (My wrists/arms look exactly like your bayonet picture). He wanted me to wait until 16 years of age or so, to make sure growth was done. So, I got my driver's license one day and went in for surgery the next. Pinned together and casted for the next couple months proved to be painful and tricky during high school (I'm right-handed). They offered no physical therapy and I have multiple scars and puffiness (probably from tissue?) I opted not to do my left arm. Then of then of course you get the kids or parents that begin to notice the scars, smaller forearms, etc. As long as I keep my weight done, it seems to be less noticeable. After two kids, and a little more weight it is more noticeable. Some say they don't notice, but I've always been self-conscious of them, especially during summer months (tanks tops, etc.) My 20's & 30's weren't too bad as far as pain goes, but now as I am approaching 40 I am experiencing high levels of pain everywhere on certain days and I seem to be taking more and more ibuprofen/pain killers to try to get rid of it. I was recently sent to a local orthopedic surgeon by my family physician after experiencing unbearable aches and pains in my arms (he also thinks I have carpel tunnel). I was diagnosed having DCS and/or MWD by this bewildered surgeon. After multiple x-rays he pulled me into his office with large medical textbooks and all and gave me his best guess. He suggested taking an inflammatory drug - but didn't know if it would work. Not knowing if this was a hereditary condition, he agreed with me to send both my children to pediatric orthos to get x-rayed. So far, my 9 year old daughter appears to be fine (her arms are longer than mine!) and seems to be taking after my 6'4" husband. My 7 year old son is built well, but does look a little smaller in stature - which makes me worry some. I pray that because I have read so much about the fact that men are less likely, he will be spared this condition. The reason I began searching for information is that there are days when I hurt and am stiff everywhere. Neck, back, shoulders, elbows, wrists, hands, knees, legs, ankles - you name it, it hurts. I wonder all the time, is this part of it? Or something else? I am by nature an active person and some days (when it's bad) it is hard to cope. Sometimes the pain brings me to tears. In my mind, I'm still 20, but on the "bad days" I feel like I'm an old lady. Does anyone have any ideas? Things that work? Will this get worse? I HAVE to find a way to deal with this - I'm too young to feel this old....
Hi, I recently came across your website on dyschondrosteosis and madelung's deformity. I am waiting to go to genetic testing as it appears that it is very possible that I (as well as members of my family) have one or both of these conditions. There is at least 1 case of dyschondrosteosis and 3 cases of madelung's in my extended family. I don't really want to have my "story" on your page (especially as I think members of my family have/will study your pages to find out more about this) but I was wondering if I could tell/ask you about my situation since you seem to know much about the subject.
I was diagnosed as having Madelungs in 1963 at the age of 13 after suffering for many years with painful shoulders and upper arms. Both arms are affected and look exactly the same as the `bayonet’ later in this article. I have since had both heads of the ulna removed which has proved slightly successful. I have two children both of whom have very mild forms of Madelungs. For many years I have felt quite alone and have found this web site very helpful.
I am so happy to have found website on Madelung's. I have leri-Weil dyschondrosteosis and until the last 4-5 years have had no problems. I am now 55 years old, in a profession requiring a lot of use of my right arm, 30+ years as an anesthetist. I am now experiencing changes in 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, something new for me. Occasionally I experience a very quick sharp pain, but it is so fleeting I cannot really describe exactly what it is. Writing has become more difficult, as is 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" was unable to share any info with me, just telling me that I had Madelung's and had no appreciation of slow progressive changes in past few years. I have pretty much ignored the Madelungs all my life, but there is definitely something going on now and I cannot find any info about changes past the age of maturity.... I have never had anybody outside of my family to discuss this with, (except doctors who mostly knew less than I) and it is not open for discussion in my family . I do have other family members with the syndrome. My mother has always felt shame for passing along imperfection. My mother was the first to show up with "crooked arms"...Her family was very poor and rural and were told she had rickets. (Boy, was that wrong!) As I approached adolescence,(earlt 60's) the appearance of my arms began to change and I was rushed off to doctor. Had a workup at local world class Children's Hospital and was told my family had Madelung's Deformity and it ran in girls. My mother, sister and I all had it and had same body build, however my maternal grandmother was much taller, leaner and didn't look like us at all, with no wrist deformity. Short stature syndromes were not mentioned at that time. One of my daughters at a very young age began having terrible growing pains in her knees and appeared to have the thicker build in her legs and knees. I took both of my daughters to the Children's Hospital, where it was determined that we all had Leri-Weil Dyschondrosteosis, which also includes Madelung's deformity. A wonderful geneticist spent time with me and cleared up so many questions. Finally everything made sense. We are all about 4"9" tall, normal torsos, short thick legs and Madelung wrists. Our wrists all appear slightly different from the others'. So..in my family, there was my mother, my sister and I, my 2 daughters. My sister did not pass it on. The gene is autosomal dominant, meaning if the gene is passed on, you get Leri-Weil. Every pregnancy for myself or my daughters presents a 50% chance of passing on Leri-Weil. Interestingly enough, the gene was probably passed down through my maternal grandfather. He had same short, thick legs, etc build as we, but did not appear to have any wrist abnormalities. His family history very splintered, but their were rumors of distant relatives with "crooked arms" I am happy to share information Although having some problems with my Madelung's now, has never been problem in past for any of us, except 1 daughter had a lot of pain in adolescence. Both daughters athletic and healthy.
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 through with tagging of the title with *** SPAM *** , *** VIRUS *** or whatever 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
diverse9@onetel.co.....m
If these email addresses fail then replace fastmail.fm or onetel.com with divdev.fsnet.co.uk part of the address and remove the 9 . Please make emails plain text only , no more than 5KByte or 500 words. Anyone sending larger texts or attachments such as digital signatures, pictures etc will have them automatically deleted on the server. I will be totally unaware of this, all your email will be deleted - sorry, again blame the spammers. If you suspect problems emailing me then please try using my fsnet.co.uk account.( for anti-spamming reasons please remove all 5 dots ..... between co and m ) Plain text only (see below)
66 Ivy Rd
St Denys
Southampton
Hampshire
SO17 2JN
ENGLAND
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
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
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: “It’s good the PCT changed its mind after the YA’s campaign, but it was wrong to not give her treatment, especially when it has proven so effective.” South East Essex Primary Care Trust confirmed Chloe’s 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 in June 1999
----------------------------------------------------------------
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..
Hebrewor Summary in 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.
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.
fash5.jpg
200 x 270 pixels - 19k
www.hotgossip.co.uk/ 99july/fash.html/fash5.jpg
http://www.hotgossip.co.uk/99july/fash.html
http://web.archive.org/web/20030125122359/http://hotgossip.co.uk/99july/images2/fash5.jpg
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 contac