Blind Marathoner Runs for a Cure

February 18, 2012 6:07 pm by: Erika Aguilar

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Streets all around Austin will be closed and full of runners on Sunday morning for the Livestrong Austin Marathon. The race starts at 7 a.m. The weekend rain should clear way to cloudy skies. But for marathoner EJ Scott, the overcast sky is still too powerful.

“In order for me to run these races, I have to be blindfolded. Otherwise, it will be super painful and damaging to my eyes. And it will make me go blind faster,” said Scott. “Which is sort of defeating the whole purpose of why I am doing this.”

Scott has already lost about 80 percent of his vision. He decided last year that in 2012 he would run 12 marathons and raise $12,000 per marathon for research.  Scott has Choroideremia, a hereditary, degenerative disease that eliminates his sight starting with his peripheral vision. The disease progresses inward until he’s completely blind. That’s why Scott runs with a guide.

Using his hands to describe the width of his vision, he said “if you cup the sides of your eyes,  it’s probably somewhere around there and maybe a little smaller.”

Signs of choroideremia normally occur during childhood. For Scott, the disease started when he was in his teens. He started seeing flashes of light and would often bump into things he didn’t see on the sides of him.   Scott’s brother and nephews have been diagnosed as well,and if he has children, they, too would be affected by the disease.

Scott says he wants to make people more aware of Choroideremia, because, he says, not many people living with the blinding disease talk about it. Scott said when he was first diagnosed in 2003, he was in denial.

“You got to get out of that at some point because it’s not just about you it’s about,  it’s a hereditary thing. It’s about  your family. This is about your generations to come and there’s other people in the world that have this,” he said.    

Scott’s  cousin will run the marathon with him as his  guide. It usually takes him about five hours to finish. He cannot wear earbuds or headphones because he must listen to his guide for directions on the curvy course and to avoid other runners and obstacles.

EJ Scott said he doesn’t consider himself a runner. He’s had to lose weight and used to be a smoker. But he said getting fit and running for charity, and an eventual cure, has been his motivation.

eaguilar@kut.org