My name is Josephine and I discovered and was diagnosed with Stargardts in 2002. My first clue was while at work I noticed I was having distorted vision. I thought I was just tired, but day after day it didn’t change. I was sent to UCLA Jules Stein Eye Center for testing and it was determined that I have Stargardts. I am the only one in my family who has it.
I tell my friends and family that it is seeing without being able to see. Like wearing a contact that is not your prescription and poking holes in it leaving you to see portions clearly and most others blurry.
It modified my behavior and my interactions with people have changed. I keep my head down when I am in public to avoid the embarrassment of not recognizing people who are no more then 4 feet away or waving at people who I think I know only to find when I get closer they actually a total stranger (I don’t recognize faces until they are approximately 3 feet away). Non-verbal communication of facial expressions is impossible for me. I miss if someone winks, raises their eyebrows in a response to something said, flirting, or rolling their eyes. On an airplane I can’t see if the flight attendant is looking directly at me or one of the other 2 passengers in my row. I have responded when they weren’t, and had both flight attendant and the other passenger got annoyed with me. So now if I am alone, I keep my head down and act like I am not paying attention.
I am unable to read cursive writing, children’s books, CD and movie covers for the titles because of colors and text used. I can’t use tweezers to remove a splinter or thread a needle. I can’t read LCD on a printer, fax machines, car radios, phones, or any equiptment that scrolls text across a screen. Signs for bathrooms, navigation through stores in malls, signs for street names, menu boards behinds counters, writing on chalk boards or dry erase boards, I can’t read ’em. I always had a problem with math, now I have an excuse to hate numbers.
I turned 40 this year and I can no longer do my job as an insurance adjuster. It has been a rough year for me. I recognize how lucky I am to have gone so long without any symptoms at all. I know that my vision is very good, all things considered. Some people have never had the level of vision that I have today. For that I am grateful. I understand there are some trial medications being tested. I am hopeful that progress will be made in the medical field for Stargardts and other macular disorders. So I am hanging on and trying to take better care of myself in hopes that it will save some of my eyesight later.
Thank you Stargardt’s Net for providing this page and for my fellow Stargardts survivors for your stories and advice.