[blindkid] Stickler Syndrome

[Steve Jacobson]

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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