9/26/2017 by Share Your Story

Patient Courage: Someday, I’m not going to be able to see anymore

Andrew shares his story of life with a rare retinal disease and why he believes in the value of medical innovation.


In New York City, you need focus.

You need to navigate street traffic, shoot glances down long city blocks, and overcome numerous obstacles on crowded sidewalks. For Andrew, it’s even more challenging.

“I used to get up and run in the mornings, and, looking back, that was probably when I started having trouble seeing in the dark,” he explains. “I started losing my footing, and branches that I thought I was missing would hit my arms and legs.”

When Andrew started as a freshman at Columbia University in New York City, his vision problems worsened. “I changed my glasses prescription twice in one year because I was straining to see the board.”
normal v tunnel vision

By his sophomore year, he was experiencing “tunnel vision,” where the peripheral vision begins to narrow and darken.

“I didn’t know what to do.”

Andrew saw an ophthalmologist specializing in retinal diseases and was diagnosed with retinitis pigmentosa, a heritable genetic disease. RP is typically seen in young adults. It’s also progressive, which means patients living with retinitis pigmentosa are often legally blind by middle age.

Just like in Andrew’s case, the first symptom is often night blindness – a condition where seeing in low light conditions becomes difficult. In some cases, people are born with no night vision at all. A common second symptom, again, as Andrew experienced, is tunnel vision.

Unfortunately, as Andrew learned, there’s no cure for retinitis pigmentosa. His search for the right treatment requires cautious optimism.

“My parents found out about this implant device that could enhance the amount of light that reaches my retina, like a bionic eye. It had the potential to turn back the clock on some of the vision loss RPers experience.”

But, his optimism was short-lived.

“Once we learned more about it we decided not to do it. There were serious risks and the cost, not including the surgery, would be $150,000.”

He’s relying on new technologies, treatment innovations, and medicine to slow the disease’s progress. For patients like Andrew, currently available treatments aren’t good enough, which makes the value of innovation immeasurable.

“It isn’t easy knowing that someday I’m not going to be able to see anymore, but I’m hoping that scientific progress can find a cure.”

Andrew says that he’s trying to stay healthy. He doesn’t smoke, works out regularly, eats a health diet and takes vitamin A supplements. There is evidence that some vitamins, including Vitamin A and Lutein, can slow the progress of some eye diseases.

“I definitely can’t see like I used to, but I’m adjusting to my limitations.”

Andrew’s days start very different as a result of his declining vision. He still runs but only in open spaces during full daylight. Now a junior, he’s still taking classes, relying on the subway to get around.

Jim Sliney, Jr.“For now, it isn’t stopping me from doing most of the things I enjoy, I just have to make smart decisions about how I do them.”

Jim Sliney, Jr., a Registered Medical Assistant, writes educational and advocacy articles for patients with rare and under-served diseases. Jim volunteers for G-PACT.org, where he serves on the board of directors as Newsletter Editor. Connect with the Bronx native on LinkedIn or Twitter.


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