LIVING WITH STARGARDTS DISEASE

Donna's Story

My name is Donna. I live in Dickson, Tennessee. I was diagnosed with Stargardt's on New Years Eve 2001. I am relatively new to this whole thing.

About seven years ago I was in college and I had to take a physical for my major. I had the physical, but failed the vision test. I made an appointment with an optometrist who told me I had severe eye strain.

Approximately two years later I was doing my clinicals (I was studying to be a medical laboratory technician) when one of the ladies in the lab told me I needed a color blindness test as part of my training. Well I failed that too although I told no one. I finished college even though if they knew I was considered color blind they probably wouldn't have let me. I guess I was in denial. I thought there was something wrong with the way I focused because I can see colors. I could tell I had some problems with the microscope so I went to another optometrist. This time I was told I had a slight astigmatism still none of this made sense. I felt like something was wrong. I wasn't satisfied so I went to yet another optometrist this time he told me I had large pupils and slight astigmatism. I went along with that even though it sounded completely bogus. I forgot about eye doctors for a while after that being completely disgusted with the whole idea.

I started working for the Red Cross in July of 2001. I was a supervisor in the Apheresis department basically that meant a lot of paperwork. I had to look over tons of questionaires that the donors fill out and lots of other paperwork. I noticed that sometimes I would write over things. I couldn't see it was already filled in until I looked at it kind of at an angle. I also noticed that when people were across the room I had trouble seeing their faces clearly. I told one of the other supervisors about this and she suggested I go to an opthamologist. I didn't know the difference I thought they were all just eye doctors. I had quit the Red Cross by the time I could get enough courage to go back to another doctor. I went in November 2001, he said I had macular degeneration but didn't know why. He sent me to a retina specialist. Needless to say at 28 the last thing I expected to hear was macular degeneration. I was relieved in a way because finally I knew I was right something was wrong and I wasn't crazy. I went to the specialist and he did the testing for Stargardts. He concluded that in all probability that was my cause although he said there was a lot of pigmentation in the angiogram photos that made it a little hard to tell. He said he was pretty sure that is what it is. I do have a cousin with it also which made him even more sure. All he said was you've done all you can do, go back to the opthamologist in six months.

I really didn't want to start the new year like this. I can say at first I was upset and believe me I cried my share of tears. I have put it all in God's hands and figure he knows what is best for me. I can still see fairly well so it is hard to actually imagine that this is going on. I can't explain it. It is almost like it's not actually happening because I don't have severe symptoms yet. At times I can tell when I really try to see something in detail. Faces are a little fuzzy and reading gives me headaches. I guess I am taking it pretty well for now although I have my moments. The scariest thing is I don't know what exactly to expect and no one can tell me how long the progression will take. I have read everything I can about Stargardts and still I have unanswered questions.

I am currently not working. I don't honestly think a lab would hire me know considering in my profession your eyes are your most valued asset. I would like to try to work part time at home or close to home.

I don't like driving long distances due to my "blind spots" it makes me nervous thinking I may not see something. It is hard to focus on red lights to see if they are red or not. I feel like I go to slow, but I guess I do pretty well.

I am very thankful we have all these ways of locating information. It has made my life easier trying to find out exactly what Stargardts is. Like most people I had no idea at the time. I am also very glad you created this website. It is nice to read other people's stories and see how this affected them.

Thanks again, Donna

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