I was diagnosed with the syndrome in 1969! I have had numerous surgeries as well as many other tests & procedures over the years! I was 1 of the 1st cases in the USA & I've begun to have a lot of issues as I have gotten older! Because of that I recently started to do some research on my condition. I am seeing pics of children and adults who have to be suffering much worse than I am! It makes me wonder what kind of treatment they're getting! I am 45 years old & I can still walk (some anyway) & most of them can't! I guess I've been 1 of the BLESSED because Johns Hopkins Hospital took me on as a patient when I was very young & made it possible for me to do & be so much more than I probably would have been able to!!! If anyone who sees this has BWS or is the parent of a child with BWS, I would LOVE to hear from you! It would be GREAT to share information!
Beckwith Wiedemann Syndrome: I was diagnosed... - BWS Support
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