Hey everyone, My name is Bridgett. I am 17 years old. I found out I had Stargardts Disease when I was in the 6th grade. Now I am a sophmore in high scholl. I live in a small town, so I don’t have many people to talk to. It gets hard and I get frustrated because people tell me they understand, but they don’t. So I want to tell you all my story.
I have had trouble with my vision since the 2nd grade. I got new glasses once every three months or so, because they weren’t working for me. I went on like this for 6 years. It got expensive so my mom stopped getting me glasses. She bought me one pair and she said I needed to keep them for a while. She thought I was just saying that the glasses were not working because I did not like wearing glasses. So when I got to the 6th grade my reading teacher told me to go get them checked out again because I was holding the book one inch from my face. I went to a new eye doctor that had been recommended. I got there and everything seemed ok, but when I was trying on glasses the doctor came back and said wait I need to take a more closer look at something. He checked my eyes again and told my mom something. A few weeks later I went to a specialist and he took a look at my eyes and stuff then he left the room. It seemed odd. He came back in and said I have bad news. He told me I have Stargardts. My parents and I looked at him like he was speaking Spanish. He explained it to me a little bit, but It didn’t seem that bad. I didn’t really understand. I got home and I researched it. After that they sent me to different people around where I lve.
A few weeks later I came hme crying because I could not see my locker combination. My mom called the school to try to see what they could do. We finally figured out to take the combination knob off and put a padlock on it. They also gave me a computer and laptop. They also gave me an aid full-time. She enlarges my papers. Everytime we have to enlarge the papers larger. I am now enlarging my papers at 250% and they are still hard to see. They started me on braille a few years ago, but I don’t use it. The people at my school are trying to push the cane on me,but neither my parents or I want it.
I recently went to an eye doctor specialist, she gave me a few things to think about getting. My appointment was only supposed to be for Half an hour, but I stayed for about two hours because she is surprised at what I had not yet been given for my vision.
To me it seems like my vision is still deteriorating. I am terrified that I will lose much more then I expect. I do have friends that will help me out, but its still scary. I want to somehow show the kids in my school how I see and what I feel. If anyone has any ideas, please let me know.
Hi there Bridgett,
My name is Colin, and I was diagnosed with Stargardts more than 25 years ago. You can read my story on the Stargardts.Net website (Colin from Sandhurst).
I am not sure when you wrote your story, or if you have had any response to it, as I only visit the site once or twice a year, but I do know exactly how you feel. Even now, after all that time, people still do not believe I have an eye problem, because when I talk to them, I look directly at them, even though I cannot see their faces. I used to use my peripheral vision by looking over their heads, but they would often ask me why was I looking behind them, so I’ve stopped doing that now.
To explain to other people what I could actually see, I made up a circle with coat hanger wire, about 6 ” in diameter, then placed an opaque film of plastic over it. I then told any one who was interested, to hold this in front of them so that it blurred their central vision, and this, I told them, is roughly what I see through my eyes. Some have said that it is amazing how I cope with life, some have just cried. I just tell them that despite having this eye condition, I have had a fantastic life, which strangely, has been enhanced by this problem. I can explain that later, if you wish to carry on communicating with me.
Since placing my story on Stargardts.net, I have had loads of emails from fellow sufferers, from all over the world, and I have travelled a hell of a lot to meet some of them. In fact, last February, I went to Florida to meet a lady and her husband, for the first time since having emailed her 9 years ago, and only last week I returned from Rhode Island, seeing a guy that first wrote to me 4 years ago. These meetings are always quite emotional, but always a lot of fun. I have found that this does make you feel less isolated.
Okay Bridgett, I think I have said enough for now, so if you want to email me in return, you now have my address. If you would like to talk to me personally, my phone number is 0044 1344 761923, or if you prefer, email me your phone number, and I will gladly call you. If you would like to verify that I am a genuine kind of guy, then you can ring the following people :-
Kelly Shaw (Rhode Island) on 1401 996 7354
Linda Kennedy (Orlando) on 1352 633 8241
I am not sure how old you are Bridgett, but if you are under 16 years old, then please show this email to your parents.
Please don’t worry too much about Stargardts, as I said befor, it has actually made my life better, and you’re not on your own.
I hope to hear from you soon.
Colin from England
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