Friday, October 16, 2009

Shedding some light on cone dystrophy

The other day I met a woman who has cone dystrophy, the same eye condition I've had my entire life. The condition affects the cone cells in the retina, impacting a person's central vision, color vision, and sensitivity to bright lights. My brothers and I are the only ones in our family with cone dystrophy, and I've never met anyone else who has it. In my case, my vision is approximately 20/200 in the right eye and 20/125 in the left with glasses or contacts. I have difficulty seeing out in bright sunlight, and my color vision is somewhat compromised so that I can't distinguish various shades and hues. Here are some examples of what this means for me: I can't drive; I'm generally unable to read menus posted up high and above a cashier's head at restaurants; I often can't figure out what color something is when I'm shopping for clothes; and I'm very nearsighted to the point of having to read regular print very closely. I do, however, get around pretty well on foot without the use of any aids, and most people can't tell simply by looking at me that I'm visually impaired.

Ketra, the woman I met, was a member of the jury panel for this year's Insights, an annual exhibition of works by blind and visually impaired artists that is presented by the LightHouse for the Blind and Visually Impaired (the organization where I work in San Francisco). Unlike me, Ketra only began to experience diminished vision later in life. Similarly, though, we both have a full field of vision, meaning that our peripheral vision isn't hindered. It was interesting to meet someone outside of my family who knows what cone dystrophy is and to chat with her about our shared condition. The next day I did a routine Google search on cone dystrophy; I do one every once in a while to see if there's anything new. Lo and behold, there's an article out there from the University of Michigan's Kellogg Eye Center called Understanding Cone Dystrophy that you can read via the link below, if you're at all inclined:

It clearly explains the condition, which I was so excited about that I promptly emailed the link to my family, as well as to Ketra. In our conversation, Ketra mentioned that there's next to no research being done on cone dystrophy. For the most part, it's true. After all, the article says that cone dystrophy affects about 1 in 30,000 people in the United States so it's not terribly common. But this figure, along with a document such as the one published by the University of Michigan, is something I never had while growing up and not fully understanding my eye disorder. It turns out that one of the article's authors, Dr. John Heckenlively, was the doctor who my family visited at UCLA's Jules Stein Eye Institute when I was 4 years old. He conducted eye exams on all five of us and wrote up a report 28 years ago. So, there apparently has been some research done on our relatively obscure eye condition since then. Yes, it's been quite a long time coming, but I think it's progress nonetheless. And I'm really glad to see it.

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