So the first thing, I am 36 years old and was diagnosed with
stickler's 3 or 4 weeks ago...

Sounds a little odd, even to me, that I had not been diagnosed before.

Maybe it can offer some hope to those that are wondering how this will
affect their young children in the future ... most people have no clue
what I have fought against.

I was born with the classic cleft palate and congenital hip displasia.
Have had numerous ear issues, a retinal detatchment and cataract
surgury in both eyes. I have scoliosus in my lower back
(non-congenital) and Schmorl's nodes in my T6,7, & 8 vertebrea etc,
etc, etc.

Most of my issues fit with 20/20 hindsight as classic Stickler's.

I only got diagnosed when my husband and I wanted to have a baby and I
tried to find out if Pierre Robin Syndrome was genetically passed on.

I need to go right now and will fill in some more in a little while ...

I hope that this group will
1) help me gain perspective on what the diagnosis means
2) I can help others gain perspective from an adult experience of
stickler's

Corinne