I am really new to this my 2 year old daughter just received NEVR as a provisional diagnosis after the discovery of a retinal detachment. We still do not know...
Thank you so such, the NEVR was a typo, my daughter has a preliminary diagnosis of FEVR based on apartially detached retina in her right eye.We do not have a...
The earlier the better. My daughter is now almost 10. She was not diagnosed until she was 4 yrs and 3 months. The earlier she is diagnosed...the better you...
Hi to all- It's Christina, mother to Hailey and Hannah who have FEVR and go to Michigan to see Dr. Trese. I have a quick question- Does anyone know of any...
Bill, Hi, Jane (composer of FEVER.net) here, I visited NIH 2 weeks ago and got some more FEVR Genetic papers for you if you want. I can not post them in the...
Hi Jane, It's Christina here and when we go to Dr. Trese in Royal Oak, we usually stay at the Travelodge on Woodward in Royal Oak. It is relatively cheap and ...
Dear Jane, I cannot tell you how sorry I am to hear what you are going through. Ironically, during a visit with Dr. Trese last month, I showed him a sentence...
Hi All, My doctor talked for a long time with Dr. Trese and I will be making an appt. tomorrow to see him for a short visit. (I guess short) I can't imagine...
Hi Jane, Dr. Trese's office is in a building that has an attached parking garage and the hospital (we have always entered on the North end) has valet parking, ...
hi all i haven't posted here in ages but i wanted to let everyone know that my 7 yo son- who has Xlinked FEVR- had an awesome report from Trese in July. his...
Good luck, Jane. i can't begin to tell you how much this website has helped me and my family. My 7 yo son has x-linked FEVR. we have been going to Detroit for...
Sorry, I haven't been on the board for a long time. Our daughter was diagnosed at 8 months and then had a sceleral buckle fitted to her right eye at 14 months...
Hi, The shooting stars are, yes, like the computer screen saver but move across my vision in a different pattern. I intend to ask my doctor what they mean in...
hi luke, my name is manda and i live in derbyshire in the uk, i have a son called quinn who will be 10 on feb 12th.......quinn was born with fevr also and he...
I am passing on this letter I recieved. ... Hi Ms. Young, I came across your FEVR website and wanted to update you on our new Retina Institute at Childrens...
Promising news from a group seeking to provide relief from retinal diseases: http://news.bostonherald.com/news/regional/general/view.bg?articleid=1078909"...
Hi We are from Australia and our daughter Rose has fevr (most probably a ressesive form as there is no family history of anything similar in either family)...
Hi Kerrie, We have a daughter just a little younger than yours. She has FEVR in both eyes, but more noticeably in her left. At 1 y.o. she had a scleral buckle...
We have an 8 year old son who was diagnosed with FEVR at age 4. He had laser treatment around his 5th birthday to zap rogue blood vessels in his eyes (the...
My daughter has had laser treatment in one eye for her FEVR. It was relatively painless for her and she has not needed any follow-up. ("Relative" to cryo...
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...
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...
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 ...
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...
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...
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...
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...
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...
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...
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