LIVING WITH STARGARDTS
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Sami from Ohio

Sami’s Story – June 3, 2009

My name is Sami, and I’m a 14 year old from a somewhat small town in Ohio. I don’t quite know when it was that I developed Stargardt’s Disease. When I was about 10, I got glasses and I guess my eye doctor, Dr. Theresa, could never get me quite 20-20 after that; it was always 20-25 or 20-30, but nothing serious. When I got in to 8th grade I started having a lot of issues with seeing the board and everything, which was a problem. Since school starts in August, and my appointment wasn’t until December, my parents just wrote a note requesting I sit upfront.

December came and I went to my eye doctor. She couldn’t get either of my eyes better than about 20-50, so she tried again a couple of weeks later and then sent me to a new doctor, Dr. Quick, to see if he could find anything. He couldn’t. Baffled, he re-referred me to a doctor about an hour away in Columbus, named Dr. Katz. Well, I couldn’t get in till March 6th, which was also my birthday, so we waited 3 mont hs.

Finally March came, we went to Dr. Katz’s office for the first time. I had the test where they inject the yellow dye into your arm to take pictures inside your eye, and let me tell you, I just about puked. I had a few other tests too before we left. I went down a few weeks later to the hospital down in Columbus for a few more tests, like an ERG and VER. So that was that.

Three weeks later, we went to Columbus again, to see if they found anything. After more tests and 2 or so hours of waiting while Dr. Katz looked over my results, he came back in, showed me the dye test and gave us his thoughts. He was pretty sure it was Stargardt’s Macular Dystrophy, a somewhat rase form of child macular degeneration. One of the other tests I had at the hospital also came out saying I had very poor color contrast. Yippee. A week and a half later, on April 29th, we got referred to a specialist; I believe his name was Dr. Alan Lutson. He confirmed the diagnosis of Stargardt’s, and is now sending me to a low vision clinic to learn how to deal with it. Every year from now on, I’m being sent to three different doctors, Dr. Theresa, Dr. Lutson, and Dr. Wulff (The doctor from the low vision clinic.)

My parents are a little… stressed at this point, because I have two older sisters, although the chances are somewhat low at this point, they could have it too (Lauren is about 16 and Shelby is almost 18). My vision is now about 20-350, so I’m considered legally blind, although they don’t expect it to get much worse, even if it still seems like it is. This is good I suppose, and there still might be a chance for me to drive when I’m older; except I’d have to go through about 2,000 hours of instructed training.

Developing Stargardt’s has pretty much changed my life completely. Besides being legally blind, I also have problems with light sensitivity, color contrast and complete night blindness. My friends and family have been so supportive, I can’t even imagine going through this without them, even if I can’t tell who they are until they speak to me. Who else would volunteer to hold my hand when we go walk around our neighborhoods at night? Most people can’t understand it, unless they’ve gone through it themselves, but it still bugs me when people come up and shove their fingers in my face, asking if I can see it. This disease hasn’t changed me besides making me more mature. I’m still the old Sami I’ve always been, just with a few more setbacks than everyone else.

My science teacher, Mrs. Petrie, showed me this website and I just loved reading all of the stories. I didn’t get around to typing this until today (June 3rd) but I’m glad she showed me. If you have any questions, feel free to contact me.
-Sami
E-mail: nevershoutsami@aol.com