[blindkid] Stickler Syndrome

[Dani Baisden]

Our daughter has no residual vision. We have been told to expect light
perception at best, but this is a long shot. I'm not sure if it is an
accurate diagnosis. The referral was the first time we heard about
Stickler. As far as I know she's had this diagnosis since birth. We have a
doctor lined up to check everything once we bring our daughter home.

Thank you so much for this information. The joint problems is one of the
things that has concerned me a little.

~Dani Baisden


On Tue, Jun 10, 2014 at 12:15 PM, Steve Jacobson via blindkid <
blindkid at nfbnet.org> wrote:

> I have known a few people with Stickler syndrome, mostly in one family.
>  Blindness or low vision is associated
> with it so it could have an effect on vision beyond the glaucoma.  In the
> cases of which I am aware, it also
> affected the hip joints, generally as adults.
>
> Even among the small number of people I have known, the effects are quite
> variable, and those with whom I am
> familiar certainly live full and productive lives.  It is interesting that
> this syndrome would be detected so
> early.  It might be worth asking exactly what caused the diagnosis to be
> made to determine if the diagnosis is
> correct.  Obviously do some research, but also remember that a lot of what
> you read about any syndrome represents
> worst case scenarios.
>
> Best regards,
>
> Steve Jacobson
>
>
> On Mon, 9 Jun 2014 15:30:54 -0500, Dani Baisden via blindkid wrote:
>
> >Hello all,
>
> >My husband and I are in the process of adopting a 3 year old girl from
> >India who has congenital glaucoma. We just received her referral
> >information and it includes a diagnosis of Stickler Syndrome.
>
> >I was wondering if anyone on this list had experience with Stickler. We
> are
> >trying to be as prepared as we can be when we bring our daughter home in
> >January.
>
> >Do you know of any resources for me to learn more about Stickler Syndrome?
> >Are there any doctors out there who specialize in this condition?
>
> >Thank you so much for your time!
>
> >~Dani Baisden
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