Jennifer’s Story – Updated 2013-09-26

I was diagnosed with Stargardts at 19, my sister who is 2 1/2 years older than me, was diagnosed when she was 14. I started noticing my eyesight decreasing in my senior year of high school and was given glasses to see the board and for driving. I would keep going back for a new prescription and it would get stronger each time. I went through the series of tests and was diagnosed with Stargardts. I was still driving at this time. It wasn’t until I turned 21 and had to renew my license and take the eye exam again (I was 16 when I got my permit and took my last eye exam) that I became devastated about the disease. Having that freedom taken away on my 21st birthday was horrible, they asked me to read the small letters and i COULDN’T even read the big letters….I started hysterically crying at the DMV…this was probably the hardest thing I’ve had to deal with.

I worked through the disappointment and dormed on campus instead of commuting. I had informed all of my professors that I will be approaching the board to write notes and they were all understanding. I wasn’t embarassed, I was proud to be strong enough to overcome the awkwardness and do what I had to do. I went to school for theater which was great because you use you mind, body and voice more than your eyes. I noticed that because of my difficulty reading my memorization skills were better than anyone else. I was always off book before anyone else. I graduated in 2006 with a 3.7 GPA and was very proud of what I overcame throughout the years I was in school.

I moved to the city for transportation independance although it gets difficult getting around when you don’t know the area. It is really easy to memorize the trains without having to read the signs. I started working as a toy demonstrator at FAO schwarz which requires interacting with the customers and talking about products. I don’t have to deal with small print or cash registers on an everyday basis which can be difficult and annoying. I ride the waveboard, a self-propelled board with 2 wheels, aka caster board, around the store and when my managers found out about my eyes they had a special meeting just to make sure I was safely able to skate around the store. I informed them about the condition – that it’s only the small details but I can see if there is a baby on the floor.

I also feel like since living with Stargarts I have developed a special bond with my older sister. We are very different people and don’t really spend that much time together but we both can relate to each other’s struggles and can understand the feelings the other person has even if we don’t always talk about it.

I am now 26 years old. Everyday I have challenges I have to deal with. I struggle with the frustration of not being able to see things., but I learn to cope everyday. I do feel like a stronger person having this obstacle to overcome. I started getting into skill toys, like juggling, poi spinning and hula hooping and I find that my lack of sight increased all my other senses and I find that my balance and co-ordination are a lot more andvanced than others. It is important to realize nothing should get in the way of what you want and you should strive to be excellent at whatever you do.

Jennifer