Hi Patti, I think almost all of us could tell you a very similar story but I do
beleive things are begining to change. My self and my sister spent 4 hours a
few months back with around 20 student doctors, going over and over what
Sticklers was. The way forward is to educate doctors so they can help others
and pass on any info we can give them.

Regards Emma

pattibun2000 <pattibun2000@...> wrote:
Hello
My name is Patti and I was diagnosed with SS in 1976 at the age of
12 when my retina detached and I went totally blind in my left eye. I
spent 5 weeks in the hospital in New Orleans to repair my retina. I
have had Laser tacking done, the removal of cataracts in both eyes at
the age of 30. I am now 41 and suffer with joint pain and scoliosis. I
inherited this syndrome form my mothers side of the family. My sisters
suffer with cleft palates, hearing loss and degenerative disc
disease,and early signs of osteoarthritis. I am now seeing signs in my
daughters.
It is amasing to me that when I told their pediatrician about this
he asked me about it and that he would have to researh it.

Patti





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