Thanks a lot Kerrie. Thanks for giving me the link to contact the other people
who have the same disease. May God bless you and also the other kids who have
FEVR.


--- In FEVRnet@yahoogroups.com, Darryl Beales <darryl.beales@...> wrote:
>
> Hi
>
> 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!
> >
> >
> >
>