Hi,
I am an adult with sticklers who has grown up my entire life (I'm 35
now) knowing I have the syndrome. As to the 50/50 chance I am the 5th
of 6 children 4 of whom have it. My issue are mainly eye and joint
related but I am happy to answer any questions anyone has. I am curious
though being a woman who has chosen not to have children because of my
sticklers if anyone else has made the same choice. I remember reading a
post from someone who had made the same decision after meeting with a
genetic counselor which is what I did as well.
Thanks
Liz

Amber wrote:

> My husband was diagnosed w/ Sticklers by a genetic's doc when I was
> pg w/ my son. I'm not sure if I believe that Sticklers is a 50% 50%
> chance of passing it on cause both my kids have it & one of my
> husbands cousins has had like 8 or 9 kids & most of her kids have it
> too or maybe it's just a dominant gene in his family. ~Amber
> >
> > 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
> >
>
>
>
>
>
>
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