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Michele from Pennsylvania

Michele’s Story

I was diagnosed with Stargardts disease when I was 26 years (1997). I had at that point heard of the disease only because my older brother was diagnosed with it a few years prior.

I am telling my story in hopes that I can find and be able to talk to others who actually have what I have and can understand what I go though. my brother is so unlike myself. His vision is not as bad and he is in complete denial and just won’t talk about it.

I am now 35 years old, married with three children. I lost my license due to my sight about a year ago, 2004. I have struggled tremendously with this. I really thought I had everything under control. I was dealing with the disease I thought quite well. It wasn’t until I actually lost my license that I realized that my life was not going to be the same. I lost all independence. I sit here day after day after day. I wait for someone to tell me that they are going to pick me up and take me “anywhere”! I have no choice as to where and when I am going out. I am at the mercy of everyone else. I hate it. I would love to know how everyone is coping with this. What do you do to be independent? Is there something I should know about? Anything? I feel so unproductive. It has been a long year and I just want to find my glitch with this and do something great! Ya know?

If anyone would like to email me I would love to hear from you.

Michele from Pennsylvania