Hi everyone,
I just wanted to introduce myself and say "hi". My name is Omar and
I was born with Sticklers about 31 years ago. I haven't actually
been diagnosed with it yet, but I'm fairly certain that I have it
since I've had most of the symptoms (retinal detachments, flexible
joints, cleft palette, ear problems, etc). I went to a geneticist as
a teenager to confirm if I had it or not, but my culture sample died
in the lab and I haven't been tested again (although I'll probably
go again during this winter). I wanted to offer some encouragement
for any parents out there that might have kids with Sticklers
(something I'm concerned about myself). The treatment for Sticklers
is so much better now than when I was growing up, and I seem to have
come out ok so far (knock on wood). There have certainly been some
tough times (permanent left retinal detachment, and repaired right
retinal detachment), but supportive parents made weathering the
occasional storm much easier. I'm an Assistant Prof now at a
university in Japan and I'm working on my PhD, so I don't think
Sticklers has limited me too much (although I wish I could have
played sports more). Anyway, if anyone has any questions they'd like
to ask, please don't be shy... just let me know.
Sincerely,
Omar