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This disease is not related to FEVR. I found a group of people when I searched with the same disease http://www.makingcontact.org/index.php?ci=1738
I can understand your feeling helpless with a new diagnosis. It's scary enough having something wrong and very frustrating when nobody has heard much about the disease.
Try and find a good retinal specialist for your son as there is a much better chance of them having seen the disease before. My daughters regular eye specialist had never seen FEVR
before, but her retinal specialist has had a "few" cases. Also they are more likely to have collueges in the field to consult with as well.
Best wishes
Kerrie
On 02/04/2009, at 2:43 PM, Esther wrote:
Hi, my son is 4-year old who has just diagnosed to have X-linked Juvenile Retinoschesis. I just want to know if it is same as FEVR? We are in Hong Kong and our doctor told us that X-linked Juvenile Retinoschesis is a rare eye disease. I don't know much about this, and can only find a few info from the Internet. Quite helpless!
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