Minnesota woman, who is allergic to sun, to run Grandma's Marathon thanks to clinical trial

Emily Pearson is a lifelong athlete. When she aged out of the pool, she started on a new path.

"I knew I wanted to get into running," she said.

But for years, running required her to cover up.

"If we did this interview a year ago, I would have been now covered head to toe just to avoid the sunlight exposure," Pearson said. "It would cause really painful reactions in my hands, feet, face, everything."

Pearson has a rare genetic disorder that causes severe, painful reactions to sunlight.

"I felt like my hands were on fire in an oven with pins and needles, burning, itching, just anything we could do to cool them off," she said.

So her goal to run long races was complicated.

"I would run at 4 or 5 in the morning, covered up outside. If it was afternoon, I would be head to toe in gear, or I would run at 9 or 10 at night after dusk," Pearson said.

But she made it happen. So far, she's run eight half marathons and one full marathon.

"I wanted to prove to myself that I could and wanted to prove to myself I can do anything I put my mind to and make younger me proud," Pearson said.

She's now training for Grandma's Marathon in Duluth, Minnesota, but this race is different. Through Mayo Clinic, she's on a clinical trial for bitopertin.

"Now I can run at 8 in the morning or 2 in the afternoon. I can run at 4 in the afternoon. I can run whenever I want and I don't have to worry about getting a reaction from EPP because it's in the sun," Pearson said.

Pearson says she's shed the anxiety of trying to always hide from the sun. She's shed the bulky clothing too.

"A lot of people can't say they've run a marathon and I can say that I did it while allergic to the sun," she said.

Pearson says her strategy for this weekend's marathon is to enjoy Lake Superior and running alongside family and friends.