Living with Leri Weill

---

My mother, my sister, my 2 daughters and myself all have Leri-Weill Dyschondrosteosis. My mother was quite tall at 5'2'......I am only about 4'9, my sister about 4'11, as are both of my daughters.
My mother was the first person we KNOW for sure had the syndrome, although my maternal grandfather had the "build" that is so familiar to all of us...short, a little thick, bow legs....he did not seem to manifest Madelung's Wrist Deformity at first sight, but was never x-rayed,, so it seems that maybe he had a very mild case. He had a rather disconnected family history but my mother remembered there were some rumors about a relative with "crooked arms."
Although embarrassment about being different was a part of adolescence, we all did quite well for ourselves professionally and in later life were able to accept that being different is not so terribly important, albeit, inconvenient at times. My daughters were both excellent soccer players, but both experienced ACL tears and the orthopedic doctor commented on how small the space was in their knee where the ligament passed through.
Now, in my 60s, I find that I have a fair amount of bone pain even at rest during the night and not just in my big joints, hips and knees. My mother was an orthopedic disaster in her latest years and completely unable to walk in her late 80s. She used a lot of pain medication as time went on.
I have always been very active physically, but am a little scared now that I can see some of my mother's complaints taking shape in my own life.
Although everyone in my family cluster has Madelung's Wrist deformity as part of Leri-Weil, we all appear little different. My bone protruded somewhat severely on the underside of my right wrist and part of the ulnar head was resected about 2 years ago. Although nobody seems to believe that, my wrists did NOT always look the way they did in recent years, now were they as symptomatic.
I would love to hear from somebody else in their senior years, about life with Leri-Weil, as I have no other information other than what I observed with my mother. I have actually educated several physicians along the way about my syndrome.
Of much concern now, is worry about needing knee and hip replacements in future years and whether my orthopedic doc will have any knowledge about Leri Weil that may be pertinent...it seems that our knee joints are quite large along with our bowed legs.