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I have now known about my condition for two years and I feel as though I have accepted it. The funny thing is the people around me don’t seem to have. It’s like they don’t want to accept that my vision is deteriorating and they pretend as though it’s not happening or it’s not as bad as it is. But if I can accept it why can’t everybody else around me? I think it has a lot to do with my age – being young the first thing people say when you tell them is “can’t you get laser?” This is one comment that is starting to bug me. If I could be treated do you not think I would have gotten treatment?!?!?! I think it’s hard for a lot of people to understand because they can’t fathom the idea of a young person becoming blind and it doesn’t help nobody has heard of Stagardt’s disease. I try and explain it as similar to macular degeneration, but as that is a condition associated with older generations people still struggle to comprehend.

I think it is hard for those around me to put them selves in my shoes and see what I can see. If you saw me walking down the street you wouldn’t know that I probably can’t see your face. It’s as though to be classified as vision impaired or legally blind you need to have the stereo typical dark glasses, walking stick or guide dog.

It is hard to deal with the fact that you are losing your sight at a young age, but the best thing I have done is to accept it and take it n my stride. I can see the world in a different light, I focus a lot on the way things sound or smell, to make up for the lack of detail I can see. I do have the bad days and feel as though I’m struggling at my job and my eyes are strained and tired, but I do believe in the future there will be a treatment and for the time being I should embrace this experience. After all whatever doesn’t kill you will make you stronger!


  1. MidLifeFire November 18, 2011 at 2:17 am Reply

    My brother & I are well into our 40's and still hear some of those ever-so-helpful, albeit well-intentioned, comments. He found it hilarious how many page magnifiers, which are useless, would show up on his desk from anonymous sources. I have found that people grow in wisdom with life experience. Your peers will seem smarter in a couple of decades.

  2. Chrissy Renee November 18, 2011 at 8:40 pm Reply

    I'm not sure if I can wait for decades to pass!! I guess they do have good intentions. I think if Stargardt's was out there more and people knew what it was it would be a different story!

  3. IkeFromNJ November 19, 2011 at 4:53 am Reply

    I thought you might like to read this quote from an article by Newsweek science editor, from ACT's CSO Dr Lanza:“We’re moving full steam ahead,” said Lanza, making final arrangements for other sites to enroll patients. Although results have not been formally reported yet, the first patients—who received stem cell-derived treatment this summer—are doing well enough, Lanza said, that “both want us to treat their other eye.”

    Sounds like great progress being made…hopefully your turn will be soon.

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