Moriah McLellan is a senior at San Diego University, finishing up her bachelor's degree in chemistry this academic year. Despite coming from sunny Southern California, she has lived most of her life trying to get out of the light, thanks to a rare genetic disorder called Erythropoietic Protoporphyria, or EPP, which causes severe allergic reactions to sun exposure alongside other issues.
Diagnosed at just ten years old alongside her sister, her childhood looked different.
“We would go to the beach as a family, but we would go around five P.M., when the sun wasn’t as strong and only stay for about 30 minutes,” she explained.
She says the reaction can include swelling and pain that will last for days, and the only way to prevent the symptoms is by covering up – gloves, hats, and face shields. Sunscreen does not prevent her from getting symptoms.
“I can be out for about 15 minutes before I start getting warning symptoms,” Moriah said.
Warning symptoms include a tingling sensation in her hands and feet, and symptoms will develop and last for days and include swelling, pain, and irritation.
In May of this year, Moriah entered an FDA clinical trial for a drug that would treat her condition at the root cause.
“It was a fifty-fifty chance whether I was going to be on placebo or the real drug, but definitely, I’m on the real drug because I’m able to be out in the sun for several hours now which I could never do before,” Moriah said.
Her experience being part of the trial has served as an inspiration for her to continue in her studies and develop drugs like the one that she says has changed her life.
“My life has been changed so drastically in such a good way by this chemical research and developing these medications,” she said. “I really want to be a part of that in the future and be that person who is working to develop those medications.”
