LIVING WITH STARGARDTS DISEASE

Leah's Story

I was diagnosed with Stargardts when I was in kindergarten. My mom noticed that I would read a book about 4 inches from my face and would have to sit really close to the Television to see anything. She took me to several doctors but they could not find out what was wrong with me. So, one doctor referred me to go to Shands Hospital down in Gainesville, FL for some tests. I was there the whole day and they finally discovered that I had Stargardts.

We came back home and went to the eye doctor with this news and he said that glasses would not help. So I was put into a pair of blank lenses to "protect the vision I had left" My eyes slowly got worse but it was a very slow process it seemed, which I guess, is a good thing. When I was 10 I went to another eye doctor and he put me into a pair of bifocals. And I could actually see! It was so amazing to be able to see the stop sign from my drive way down to the end of the street only one house away, to see a plane flying in the sky instead of just a small dark blur.

Even with the bifocals my eyes were still getting worse. My mom signed me up for some sort of thing where they question/test everyone in your family to see who was a carrier for the Disease and who had it last...They couldn't find any other cases.

When it came time to get my drivers license I passed the test with enough vision but could not drive at night. By the time I had to get my license renewed I just barely squeaked by. I no longer like to drive even though I still have my license. I do not feel comfortable doing so. When I went to my last annual exam (Jan. 24, 2002) I was proclaimed Legally blind even corrected.

It is somewhat of a relief to know that I have finally crossed the threshhold into being Visually Impaired. Just recently my husband bought me a stove that has the knobs on front since I could no longer see the knobs on the back without leaning over. We have also had to "whiteout" the line on the washing machine knob so that I could also see it as well. Being visually impaired doesn't bother me all that much. THere are times when it seems to sink in and I get frustrated but there isn't much I can do and I have known about having the disease and how bad my eyes could get since I was 5 or 6. In a way, Stargardts with me is sort of a blessing. I now have an excuse to stay home with my 1 year old daughter instead of letting someone else watch her during the day.

Leah

Added 06-02-2002 Home / More Stories ....