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Dear Christina
FEVR is constantly reported in the medical and scientific literature as a very rare disorder. However no official figures have ever been calculated. I suspect this "very rare" label came from the fact that ophthalmologists rarely saw cases. However, as FEVR was only first described in 1969 it is only in the last few years that it has become widely known about. As such I suspect that many cases were mis-diagnosed. While FEVR is not "common" we suspect that it is more prevalent than previously suggested but are unable to put an official figure on the incidence rate at the moment.
Carmel
Dr Carmel Toomes
FEVR Research Team
-----Original Message-----
From: FEVRnet@yahoogroups.com [mailto:FEVRnet@yahoogroups.com] On Behalf Of chrreed
Sent: 10 June 2007 21:19
To: FEVRnet@yahoogroups.com
Subject: [FEVRnet] How Common is FEVR?Hi to All-
My name is Christina and I am new to this group. My twin daughters
Hailey and Hannah who are 1.5 yr old both have FEVR as well as other
abnormalities. Someone asked me the other day "How common is FEVR?"
I said that it was rare but I don't remember ever reading about any
study to determine how rare it really is. Does anyone out there know
of any studies that have been published as to how often FEVR occurs?
Christina
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