Comments on: Leri Weill Dyschondrosteosis

By: Dr Arun Pal Singh

Dr Arun Pal Singh — Mon, 05 Sep 2011 08:22:42 +0000

@louise brown,

I would suggest you to take her to a specialist who can evaluate her. The worsening is definitely a factor as the growth occurs but how much cannot be answered in advance.

By: louise brown

louise brown — Sun, 21 Aug 2011 14:49:13 +0000

my daughter is 11 years old she has leir weil dischondrosteosis. she suffers from alot of pain in her joints espeically in her knees. she also gets alot of lower back pain. I dont know much about the condition i was just wondering wether this condition gets worse has she will get older. and also is it known that childeren who have this conditon suffer from learning problems too? Rhiannon is below average in maths and english and struggles with learning.

i hope to hear from you soon
any information would be great thank you

By: katy

katy — Tue, 12 Apr 2011 05:08:08 +0000

I have both madelungs and leir weil dischondrosteosis and mesomelic dwarfism. I am having excruciating pain in my hands and wrists, but cannot find a dr that knows anything about the deformity. I live in Idaho and have been to dr’s in several city’s all of which just think i’m making it up, but if i go to the emergency room I have to read my own xrays because they assume dislocation every time. not sure what to tell the docs when i go in so they will at least examine and help with pt or rx relief…preferably pt.

By: Dr Arun Pal Singh

Dr Arun Pal Singh — Sat, 28 Aug 2010 16:08:37 +0000

@Anna Newman,

How Can I Help You? I cannot advise you as physician because that would need a physical meeting and examination.

If you want information on any other aspect, you would need to be specific.

By: Anna Newman

Anna Newman — Sun, 15 Aug 2010 08:40:00 +0000

I am a 36 year old female with bi- lateral madelung deformity. I am 5’9″ how ever was diagnosed with lerri- wills disconderosis around age 18-19. This didn’t make sense to me even then. I have since I think more correctly been diagnosed with Ehlers Danlos hypermobile. After having 3 strokes in nov ’08 it’s is now thought I have some sort of vascular / hypermobile hybrid of some kind. In the last year or so I have developed an excruciating left hip problem. I was told it was a femoral (a ) hip impingement. Could this be an extending of the SHOX gene. Or part of a disconderosis even though I’m relatively tall. I know some forms of dwarfism have sevear hip problems. The surgons in Dallas are scared to touch me and although I have had chronic pain since about age 12, I must find an answer for this hip. It has me in a wheel chair for more than very short trips, and almost house bound. I know this combo of problems is almost totally unique. And I have had to do much of the the research personally all my life to get care. And of course have many secondary issues that complicate matter even further. I can theroize on this but have no way to find the answer and looking for some help.

Thank you for anything you may have to offer
Sinserally
Anna
Anna

By: Dr Arun Pal Singh

Dr Arun Pal Singh — Tue, 12 Jan 2010 04:33:59 +0000

@donna,

It would help if you specify your location or area you are in.

May be then some body in this thread may help you.

By: donna

donna — Mon, 11 Jan 2010 17:15:55 +0000

My daughter , 13, gymnast was diagnosed with Madelung’s deformity.
The bone is sticking out and you can move and push on it and it pushes down and up.
She pounds on the wrist with gymnastics as she is a high level competitor.
Can you tell me if you know a doctor who specializes in this? We are meeting wonderful
hand surgeons’ but they don’t know much about it and have not performed any surgery for it.
I want the guru guy/gal that knows this deformity any help would be appreciated.

thanks

By: Madelung Deformity | Bone and Spine

Madelung Deformity | Bone and Spine — Mon, 02 Nov 2009 03:00:30 +0000

[...] Dysplastic: Associated with bone dysplasias like multiple hereditary osteochondromatosis, Ollier disease, achondroplasia, multiple epiphysial dysplasias, and the mucopolysaccharidoses . This type can also be seen secondary to sickle-cell disease, infection, tumor, and rickets. The most important dysplasia associated with MD, however, is Leri-Weill dyschondrosteosis. [...]