Hi, my son is 4-year old who has just diagonised 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!

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!

> >

> >

> >

>

You are fortunate to be in HK where I'm quite sure you can find a good retinal

specialist. Our daughter was diagnosed with FEVR while we were living in

Shanghai and we had an awful experience getting treatment there. We ended up

flying her to Fukuoka in Japan once a month for quite awhile to get treatment.

We now only have to go to Japan once a year and a local retinal specialist (we

now live in Malaysia) monitors the condition for us at other times. He too said

that he would be lucky to see a few cases in his career, but he knows enough to

monitor the condition and recommend a trip back to Japan if he diagnoses

anything as being amiss. Good luck!