http://health.groups.yahoo.com/group/FEVRnet/ Familial Exudative Vitreoretinopathy Wed, 09 Sep 2009 19:17:07 GMT Jane Ann Young http://health.groups.yahoo.com/group/FEVRnet/message/46 http://health.groups.yahoo.com/group/FEVRnet/message/46 Hi, I can answer your question about your eyes not looking like they are looking straight. I hated this problem too. When you have FEVR, over time it drags Tue, 11 Aug 2009 21:20:31 GMT William Hassett http://health.groups.yahoo.com/group/FEVRnet/message/45 http://health.groups.yahoo.com/group/FEVRnet/message/45 Hi,        My nine year old daughter has FEVR which we discovered when she was 13 months old.  I am not a retinologist but I highly recommend you get a Tue, 11 Aug 2009 01:40:02 GMT Max Bodnar http://health.groups.yahoo.com/group/FEVRnet/message/44 http://health.groups.yahoo.com/group/FEVRnet/message/44 Hi and thanks so much for the info, our daughter is 5 years old and suffers from FEVR   It would be fantastic is something was discovered, thanks once again Mon, 10 Aug 2009 19:54:12 GMT trillianz1990 http://health.groups.yahoo.com/group/FEVRnet/message/43 http://health.groups.yahoo.com/group/FEVRnet/message/43 Hi, I'm a teenager with FEVR and visit Moorefields Eye Hospital in London, UK every year. I have recently been to visit the hospital, to see if there is Sat, 18 Jul 2009 00:29:54 GMT Darryl Beales http://health.groups.yahoo.com/group/FEVRnet/message/42 http://health.groups.yahoo.com/group/FEVRnet/message/42 Hi, Glad that the patching helped. We had to patch our daughters right eye as well from about 4-5 1/2 whilst it didn't improve her vision as far as the eye Tue, 14 Jul 2009 00:02:18 GMT gwkuma007 http://health.groups.yahoo.com/group/FEVRnet/message/41 http://health.groups.yahoo.com/group/FEVRnet/message/41 Hi, haven't posted on the board for awhile but we just wanted to share some positive news. As a background our daughter was diagnosed at 8 months. She has FEVR Thu, 04 Jun 2009 18:41:26 GMT Jane Young MS http://health.groups.yahoo.com/group/FEVRnet/message/40 http://health.groups.yahoo.com/group/FEVRnet/message/40 I have received an E-mail from Dr. Tsilou, head of the National Institute of Health (NIH) Eye Clinic that the FEVR genetic clinical study is ending due to lack Fri, 03 Apr 2009 07:14:07 GMT gwkuma007 http://health.groups.yahoo.com/group/FEVRnet/message/39 http://health.groups.yahoo.com/group/FEVRnet/message/39 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 Fri, 03 Apr 2009 03:04:03 GMT Esther http://health.groups.yahoo.com/group/FEVRnet/message/38 http://health.groups.yahoo.com/group/FEVRnet/message/38 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 Thu, 02 Apr 2009 09:21:54 GMT Darryl Beales http://health.groups.yahoo.com/group/FEVRnet/message/37 http://health.groups.yahoo.com/group/FEVRnet/message/37 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 Thu, 02 Apr 2009 03:44:04 GMT Esther http://health.groups.yahoo.com/group/FEVRnet/message/36 http://health.groups.yahoo.com/group/FEVRnet/message/36 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 Tue, 02 Sep 2008 20:16:40 GMT pippa.milles http://health.groups.yahoo.com/group/FEVRnet/message/35 http://health.groups.yahoo.com/group/FEVRnet/message/35 Hi Luke & Manda! Thanks for your messages. We are another FEVR family in the UK. My son Arthur is nearly 3 years old and has (we think) the recessive form of Sun, 29 Jun 2008 16:06:16 GMT Jane Young MS http://health.groups.yahoo.com/group/FEVRnet/message/34 http://health.groups.yahoo.com/group/FEVRnet/message/34 Subject: Translators Wanted for fevr.net Website From: Jane Young, Host for http://fevr.net If anyone out there in cyberspace writes another language and would Sun, 22 Jun 2008 16:07:44 GMT Jane Young MS http://health.groups.yahoo.com/group/FEVRnet/message/33 http://health.groups.yahoo.com/group/FEVRnet/message/33 Note to all who are looking for place to find latest FEVR information. Go to website http://www.highbeam.com Here is link for FEVR search Wed, 18 Jun 2008 03:09:19 GMT chrreed http://health.groups.yahoo.com/group/FEVRnet/message/32 http://health.groups.yahoo.com/group/FEVRnet/message/32 Hi to All- It's Christina, mother to Hailey and Hannah who have FEVR, and I have a question for everyone. I have a genetic condition called Factor V Leiden