Rareshare

Thanks for the response. I appreciate you taking the time. Like you, I've had to do A LOT of my own research into this condition for my daughter. Although she does have a hand/wrist ortho who is very familiar with it, and will do surgery if/when she needs it (still waiting to see how the deformity progresses). But figuring out all the other issues she has, and if they're related to the Leri-Weill has been a struggle. Do you have a lot of wrist pain? Have you had any surgeries? Another one of the Leri-Weill issues still to deal with for my daughter is her height as she is definitely shorter. I wonder, do you mind if I ask how tall you are? Right now, my daughter is 15th percentile, which is really pretty good, so we're not sure whether or not do start growth hormone. Her Endo projects she'll be 4'8" - 5'0" adult height w/out hormone treatment. Thanks again.

Posted by heathermcdonald
3 Feb 2013, 03:51 AM

My experience has not included a large number of sprains, fractures, etc. I definitely have joint pain (primarily my knees) and I do have some type of issue there. Of course I also have the wrist/arm issues. :) When I was diagnosed (25+ years ago), it was recommended a see a specialist for my knees and for the MD, but really since then all I've learned has been through my own research. At the time, the doctors treated it as "here's what it's called and there's nothing we can do about it, so good luck to you". I know this doesn't really help, but wanted to respond regardless. :)

Posted by Lilysmama
2 Feb 2013, 02:45 PM

I would like to know if others with leri-Weil have joint and bone issues beyond the wrist deformities. My 9 yo daughter has had numerous fractures, sprains, and subluxations, and general aches and pains. We are trying to determine if its related to the LWD or something else. Would LOVE to hear from others w LWD.

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