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From: Suzanne
Date: 11/25/02
Time: 9:53:48 AM
Remote Name: 128.83.101.96
I am currently 20 years old an was diagnosed with JMD 3 years ago. My sister (age 22) also was diagnosed with JMD. Although my vision is still fairly good (20/50 and 20/70) i have great difficulty reading and such due to interference in my visual field. I see a great deal of spots in my vision. 1. Constant jumbled movement of small dark spots with flashing light behind them.(always in the center of my vision) 2. Occasionally a bright white light that covers my whole sight for 1-2 second intervals (repeating itself for 10-15 seconds...(almost the same effect of looking into a camera flash) 3. Clouds over my vision... a splochy glaze over my vision 4. Distortion when i look at things (parts of what i read are missing and suddenly reappear)
Everytime i tell the doctors about my spots they dont know what to tell me...they said usually people dont see spots like mine. My sister does not have teh spots. Does anyone else see spots?
Also... I have another quesion.
I have a great deal of difficulty telling my friends about my vision. Everyone notices that i have vision problems (calling me blind and such...jokingly...they assume!)...but i can still get away with saying that i need new glasses. I've tried telling a few people... but i cant seem to get the right message across. They either dont think its NOT a big deal (which it is) or they think i'm blind (which i'm not). I end up just having them look it up on the internet...but i feel like i should be able to explain it appropriately (seeing since i have the disease). My sister (her vision is worse than mine) told me the only thing people can understand is the word blind. So when i told one of my friends... i said i was 'going blind' but i am not blind yet. Then he kept using the word BLIND... which is so hurful to me. It just resonates in my head (blind...blind...blind)... i dont like using that word when describing myself. Does anyone have any suggestions on what i can tell my peers (other than using the word BLIND). Keep in mind that i am still a bit in denial about the whole scenario that my sister and I have come across. I just assume hide my vision problems from everyone... but its getting very difficult to hide it. thanks
suzanne skamel@mail.utexas.edu