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Amanda’s Story

Hi my name is Amanda and I am 20 years old, married with 2 kids 3 1/2 and a 2 year old. I also have one on the way. I was diagnosed with Stargardts a year and a half ago. I was ok for a while – they told me that it would probably take 10 years before I was legally blind. I am now legally blind corrected vision. This has gone so quickly. I spend so much time telling and trying to show everyone that I am tough and strong that I don’t take the time to have my own feelings. Every now and then I have my own breakdowns I am still not sure how to live with Stargardt’s. I also for some reason am losing my peripheral vision. So in the end I will lose almost all of my sight. My family tries to help but they are still adjusting to what I can and cannot do. I know they are trying to be nice so I try not to say anything, but sometimes I just breakdown and sort of freak out I guess. My husband is wonderful, he is my rock that holds me to the ground. I can see everyday how this affects my life but I refuse to give in and just let it take my sight. I am always looking for new things that even may help.

I am grateful to have my husband and my children. I am so glad I was given the opportunity to see them before I lost my sight. I am also grateful to have my family – without their support I couldn’t deal with this disease. I want to tell people that they are not alone. I live in an area that I know of no-one who has Stargardts. If I did know people with it I would hold there hand and help them any way I could. It makes me sad to think that little kids get Stargardts.

My email is: