Hi everyone. I am Amy and new to the group.
I was wondering if anyone out there who had been diagnosed with SS
before having children had discussed the possibility of not having
children because they would have Stickler Syndrome and the effect it
would have on the child and to the adult as they would both require
constant treatments etc.

Just a bit of info on me for you - I am 23 and live in gorgeous Wales in
the UK, i was diagnosed with SS at around the age of 1. i was born with
a cleft palate of the soft palate which has been repaired amazingly. I
have had cryotherapy on both eyes and two retinal detachments in my
right eye alng with a cataract removal. I have recently been diagnosed
with scoliosis in my spine and also that I have degenerative areas and
am suffering very much with my back at the moment without much help from
the doctors at all. My Dad also has SS and had a detached retina in his
left eye at 6 which unfortunately could not be prepared in time and
recently had one in his right eye which was saved by our miraculous
surgeon (seriously the guy deserves a knighthood!), He is also beginning
to suffer with his joints and is going in for a hip replacement in the
next couple of weeks.

Thanks for reading this. Amy X [:D] [:-B]



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