Man Copes with Retinitis Pigmentosa

The National Institutes of Health defines retinitis pigmentosa (RP) as an eye disease involving damage of the retina. The disease often runs in families. Symptoms can include decreased night and peripheral vision, and in advanced cases, central vision loss.

Todd Williams reads this column in the Middlesboro (Ky.) Daily News. Besides having RP the last 28 years, he was born with spina bifida and has a meniscus tear in one knee further affecting his ability to get around.

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“I first noticed something wasn’t right when I was student teaching at age 22,” said 50-year-old Williams of having RP. “While I was teaching, literally rows of desks just started disappearing right before my eyes. I thought I was losing my mind. It didn’t make sense that I could see those desks (peripherally) one minute and then the next they were gone.”

An eye doctor first thought hydrocephalus related to his having spina bifida was causing his eye problems. By age 25 due to RP, and after being diagnosed, he had almost lost his entire visual field. He could see only five degrees in each eye and was unable to drive an automobile, even with the purchase then of a special pair of $1,200 glasses that increased his field of vision to about 25 degrees. His condition has remained relatively stable over the last 28 years.

As for today, he said, “When I walk, I first have to look down and then move my head and body side to side, like a windshield wiper, to scan the entire area to make sure I don’t trip over anything. At night, I have night blindness. If there isn’t any light, I absolutely can’t see anything, which makes going out at night problematic.”

Until having a meniscus tear and taking a leave of absence, he was employed through a Tennessee state agency. His biggest frustration has been in being unable to drive a car.

He advised people recently diagnosed with RP: “Figure out what you can do with what vision you have. When I first lost my vision, I was so upset. It really did affect my mind. I felt everything was lost and hopeless, and then I learned it wasn’t. This was my experience. After I got over the mental part of having RP, I more or less learned what I could do with what I had. And that took time.”