Hi Patti

I think you'll fine that most of us have to educate our or our children's
doctors about this. It is still amazing to me too. Welcome. I think you'll
find a great deal of information and support here. We have a great bunch of
people here.



Tony Sizemore



"Life ultimately rewards the pursuit of authenticity"

Phil McGraw

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From: sticklersyndrome@yahoogroups.com
[mailto:sticklersyndrome@yahoogroups.com] On Behalf Of pattibun2000
Sent: Sunday, July 17, 2005 8:06 PM
To: sticklersyndrome@yahoogroups.com
Subject: [Stickler Syndrome ] I was diagnosed with SS in 1976.



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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