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Hi everyone,
I'm 26 and living in london, I have known that I have had Stickler
syndrome since an early age. I have been fourtunate by not having a
cleft palate. In fact everyone in my family has been lucky that is
hasnt been included. We do how ever suffer with extreme myopia,
arthritis, and high frequency hearing loss.
My grandfather had the condicion first and I do believe his mother
did also. The genectic doctors have a theory as to why my family has
the disorder, they believe that is has something to do with two
blood related cousins way back in my family having a child, I am
unsure how true this theory is.
I'm expecting a baby in 4 weeks time, we are very excited, I hope
that he doesnt have the syndrome but if he does then it wouldnt
matter either way as I have had a good life so far, perhaps not as
active as I would have liked but Im happy with it all the same.
Would be good to chat to Mum's, Dad's or anyone who has sticker's as
there are not many of us about really and it would be great to make
friends with people who I will have something in common with.
Oh I have one question before I go and I hope someone can answer it
for me, how long will be it be before the hospital can tell if my
baby has the syndrome, from the time his born? I asked my gp (Home
doctor) and he couldnt give me an answer.
Thanks everyone for reading my post,
Regards
Jody
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