Nystagmus Support Group

I'm surprized it took so long to diagnosis this. I have been told there is a surgey to slow the eyes down. As the child gets older the movement w/therapy will really help to slow down the movement. I notice my son tilts his head a certain way at times to help focus. As far as the light not sure,my son also has occular albinism and the light is very bad for his eyes and skin but he wont keep a cap or sunglasses on anymore!Good luck and do some research if you can get the answeres here. It's not real common. Good luck to you.

my boyfriend has congenital Nystagmus. He drives and everything so his vision isn't really badly impaired he just needs glasses

My son was 2 months old when he was diagnosed with Congenital Nystagmus. He is now 20 and a Junior in college. Surgery was mentioned to us years ago but back then there was only a 50% chance of it improving his Nystagmus. Some doctors told us they wouldn't do it just yet because there was also a chance of the surgery over correcting and causing more problems. So we never did have the surgery. My son has done well in school and was a B student, he played sports (although was told he shouldn't play baseball), was able to drive a car, etc. I found a lot of help and support from the The Nystagmus Network which you can google. They are based out of the UK. My son was given prism glasses to wear when he was 5, but of course would never wear them. Now he has a bit of an eye drift "myopia" (I think) and that could have been from not wearing his glasses at that time (now they tell me?) But google The Nystagmus Network for sure to check them out. Good luck!