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Heather from Illinois

Heather’s Story

Hi, My name is Heather and I am 25 years old, diagnosed with Stargardt’s when I was 13 years old. I noticed changes in my eyesight during my teenage years and was considered legally blind when I was 21. Having the disease did make my academic life and social life more difficult than in the past. I was considered a gifted student since my early childhood. The more the disease progresseed, the harder it became to read my class materials and assignments from school. I still manged to do good in school and get good grades, but it took a little extra effort.

I went off to college at Eastern Illinois University where no one was aware of how severe my condition actually was ; I was not about to tell anyone. I was afraid the school would boot me out because of my disability. College was tough; I struggled with class notes and eventually had people take notes for me. I became aware that I would need help and had the disability counselor inform all my teachers of the condition. I needed modificatioins to pass the classes. I majored in Special Education– learning disabilies and Behavior disorders. Taking the classes was not the hardest part.

I finally got to student teaching and that was when I fully realized and admitted to myself that teaching may be too difficult with my vision problem. I had many teachers tell me that I was struggling a lot with reading books and grading papers. I finally graduated but also left with warning from other teachers that my choice of career may not be appropriate for me. I was confused on what career choice would be good for me.

I am currently working at an early childhood center with toddlers I chose this path because I do not have to do much reading and I am never left by myself to watch over 10 children. I like the children, but feel that my mind could be challenged in other ways. I am still contemplating on what step I should take next.

I have a boyfriend that I met at college and have been dating for almost 4 years.. He is fully sighted. He lives an hour and a half away from me (near Chicago) so I see him mainly on the weekends. It is hard to have this relationship because he has to do all the driving and he lives far away. (Neither one of us want to move from where we are living.) However, he is willing to drive out here to see me.

My social life can be difficult because I rely on people to pick me up and drop me off. I live in a new town with one of my friends from high school. She can be quite busy so I do not rely on her that much. My boyfriend often takes me places where I need to go. I will never iive with the freedom to go shopping or just stop on over at a friend’s house whenever I feel like it. I get disappointed about three time a week. (I do take ADA Pace bus to work and back every day.) would like to meet more people with Stargardt’s, but I do not know anyone from my area. It would be nice to meet someone that went through similiar things that I go through. My e-mail is: