Blindness from Choroidermia Didn’t Stop This Man from Running 12 Marathons

What happens when you imagine running a marathon? Unless you are an avid runner, the thought may make you laugh or even cringe. Running even one marathon may seem nearly impossible or, at the very least, like it would take several months to accomplish. Now, imagine yourself running 12 marathons in one year. Is the idea getting even more ludicrous?

To top it all off, imagine running 12 marathons in one year while blindfolded! That is exactly what EJ Scott, who lives with Choroideremia, did in 2012.
Who is EJ Scott?

Any True Blood fan will be familiar with vampire Jessica Hambrey, played by Deborah Ann Woll. Woll’s longtime boyfriend is EJ Scott. He’s a career comedian, who made a name for himself in Chicago before moving to be with Woll in Los Angeles.

Scott also has a degenerative eye disease known as Choroideremia, which has left him legally blind. Choroideremia causes progressive vision loss that mainly affects males. The first sign is usually night blindness that occurs in early childhood.
The making of a runner

According to a 2012 interview in Michigan Ave, Scott has not always been a marathon runner. Perhaps the thought of running even one marathon was once as foreign to Scott as it may be to some of us right now. He used to be overweight and started his health and fitness journey back in 2009. The following year, he decided to train for a marathon to kick those last few pounds. Because of his condition, he is very light-sensitive. He knew the light during the marathon would bother him, so he ran the marathon blindfolded.

Scott ended up getting some publicity for his marathon run and decided he would continue his running and hopefully garner more awareness and support. Thus the decision to run 12 marathons in one year. He ran to raise money for the Choroideremia Research Foundation.
Why he ran
Choroidermia runs in Scott’s family.

Because it is an inherited disease that affects primarily boys, Scott was very concerned when his sister became pregnant. He knew that if she had a boy the child would likely have the disorder as well. This inspired him to start speaking up more about his disorder. When Scott thought back to his childhood, he remembered the silence of his grandfather who also had the disorder but rarely talked about it. Scott stated:

“The worst thing for a cause is silence.”

He ran each marathon with an athletic guide, some of whom ran multiple marathons with Scott and supported him physically and mentally. Scott’s goals were to support the Choroideremia Research Foundation in an effort to erase the denial and shame surrounding having a disorder.

Learn more about EJ Scott from his website here, and learn more about the Choroidermia Research Foundation here.

Can you imagine running a marathon blindfolded? What does Scott’s story inspire you to try? Please post on Patient Worthy.

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