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AFBAmerican Foundation®
for the Blind

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9mth old with Sensory Retinal Dystrophy and Congenital Nystagmus..

i am looking for info on sensory retinal dystrophy. anything will help. contact me at osupuppy@sbcglobal.com

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Re:14mth old with Congenital rential dystrophy



the doctors told us my little boy had congential rential dystrophy and ive researched this over an over an no treatment. its scary to know that he can go blind and we cant change it. what can i do


Re:9mth old with Sensory Retinal Dystrophy and Congenital Nystagmus..



my daughter is 11 months and has been diagnosed with the Lebers rental dystrophy. I am looking for another parent that is going though the same time. Her development is delayed and i was wonder if your daughters is also and how much. Do u know what she is seeing? My daughter can see a little but we dont know how much. The doctor says we wont be able to know how much until she is older. If u would like to chat email me my address is taryn789456yahoo.com


Re:9mth old with Sensory Retinal Dystrophy and Congenital Nystagmus..



I just found out i was given the wrong name for my daughters diagnosis. She has Lebers Congenital Amaurosis. I havent read great things about this disease. it is not treatable so my daughter will probably never see. i am very scared for her. if anyone has any advice for me let me know.
thanks
kristan


Re:9mth old with Sensory Retinal Dystrophy and Congenital Nystagmus..



Hi my daughter is 11 and she was born with septo optic dysplasia.She is leagelly blind.I found a good bit of stuff on healthline.I hope it will give you some answers.

carrie


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