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AFBAmerican Foundation®
for the Blind

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mystery white in olivers eyes ...

hello my five month old was born blind we are awaiting dna test for answers cat scans , ultrasounds , bloodtests , and other eye exames havent given us any answers ...

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Re:mystery white in olivers eyes ...



white.... hmmm...., it couldn't be cataracts, can it? everytime my parents talks about when they first spotted my eye condition they discribe it as white.


Re:mystery white in olivers eyes ...



if you live on the west coast, you may consider seeing dr. khaled tawansy in los angeles. our 4 yr. old son has x-linked juvenile retinoschisis. you may contact me at steve@remaxsr. com.


Re:mystery white in olivers eyes ...



Have your doctors considered the possibility of FEVR (Familial Exudative Vitreo-Retinopathy)? This disease can present with a white reflection in the eyes like retinoblastoma, which is caused by retinal folds that pull the retina up against the back of the lens. The disease process in the eye looks very much like Norrie's disease, but the gene mutation is slightly different and FEVR does not carry the other side effects related to Norrie's, such as mental retardation and hearing problems. FEVR is extremely rare, but it can appear without a family history. My husband's case is the index case for our family, and he was misdiagnosed until our youngest son was born. If you are anywhere near Michigan (or even if you're not), consider consulting with Dr. Michael Trese at Beaumont Hospital in Royal Oak, near Detroit. He is the world's expert in FEVR, and one of the leading experts in childhood retinal issues in general. I've seen folks in his office from Greece and New Zealand. He's running several genetic studies on the condition, so you can get your son gene tested for it for free through the study. This is a very rare disease, but early diagnosis and treatment can help preserve what vision your son may have.


Re:mystery white in olivers eyes ...



thanks for your response .. little oliver gets lotsa love and he was actualy an 8 lb full term baby wich i heard has a lesser chance of eye problems one doctor does not feel its retnoblastoma other input has suggested norees disease we feel it is neither of those...


Re:mystery white in olivers eyes ...



Hi! I am very sorry to hear that. I know that you are wanting answers but it takes time. I would rather it take a while and them get it right, than them to rush and maybe miss some thing. I was born premature, had most of my vission until I was in my early teens, but I know that it can be hard. I had to watch my father hurt over my disability for as long as I can remember. The best atvise I can give you is this: "Please treat your child like they are normal, teach them as much as you can as soon they are able to learn, loveyour child no matter what, and above all have hope. Although I wasn't born blind, I had troubles like any other blind child or adolt would. Because my father had so much faith in me and what he new I was capible of acheeving, I am about to graduate from college in May with a dagree in ferinsics. It is what I love and glad I had a father to stand beside me. So, please just do what is best and love your baby with no end and every thing will work out I promiss. If you wold like to talk father, please write me at marandas09@gmail.com. I am also a mother of two and I know how hard parentling can be at times. Thanks for reading what I have to say and I hope to hear from you soon
Ashley s.


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