Hi Penny,
My name is Marianne and I have Sticklers and Pierre Robin Syndrome.
I'm not sure what age I was diagnosed.I'm 37 and live in Australia. I
have a 17 year old son who also has both of these syndromes. He was
diagnosed at 3mths with Sticklers.
It can be tough dealing with these conditions when doctors don't know
much about it.
I don't write much in the forums as most of the people in here live
in the USA and it seems things get done a bit differently over there,
but if you want to talk feel free to drop me a line.
Marianne










--- In sticklersyndrome@yahoogroups.com, charlene north


<gramafsh@...> wrote:
>
>
> Hi Penny,
> Iam not an adult with sticklers but my son is the only one of 5
children with it.We have tried to trace it but cant find it in either
family sides.
> What are your symptoms? He has retnal detatchments,glucoma but no
others so far.We were diognosed when he was 14 he is now 20 and
legaly blind.
> If you would like to chat write back..take care,Charlene
>
>
>
> To: sticklersyndrome@...: pr_lockridge@...: Tue, 16 Sep 2008
12:00:51 -0700Subject: [Stickler Syndrome ] looking for adults with
sticklers
>
>
>
>
> Hi. I was born in 1961 with sticklers although we did not know that
it was sticklers until two years ago. I am the oldest of 2 and my
youger brother is fine. I am the only person on either of my
parents side that has sticklers. I would like to chat with other
adults like myself.Penny[Non-text portions of this message have been
removed]
>
>
>
>
>
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>