With Easter fast approaching, many people are preparing to spend some time in the spring sunshine. From outdoor Easter egg hunts to family barbeques, the outdoors are the place to be this time of the year. But for one Syracuse University student, it's all fun and games until the sun comes out. Craig Leppert, 20, has a rare genetic disorder, called erythropoietic protoporphyria (EPP), that makes him allergic to sunlight.
"When I get burned by the sun, it feels a lot like pouring hot wax on your skin, or having your hand cut with a knife and put over a stove," Leppert explained. "It's probably the worst feeling of pain I've ever felt. And I've broken a bone before, and I'd rather break a bone than get burned by the sun."
National EPP Awareness Week
This week marks National EPP Awareness Week, a time of the year that Leppert often uses to spread the word about the effects of this disease.
"I met a ton of people through Facebook and e-mail who have EPP who see me and my family on TV and they reach out," he said. "They didn't know they had it 'til they saw similar symptoms of what I went through with EPP. So that's kind of a cool thing and to meet people and bounce ideas about EPP off of each other."
EPP is a rare disease. According to the American Porphyria Foundation, an estimated 50,000 to 75,000 people suffer from EPP in the United States.
It's so uncommon, in fact, it took Leppert and his family a few years before they discovered his diagnosis. He said he first started exhibiting symptoms when he was 18 months old.
"My family took me to an apartment complex pool, and I just started itching and scratching my face and hands and didn't know what was wrong with me," he said. "My parents somehow got me to sleep that night, and when I woke up my hands were distorted and were like little boxing gloves."
EPP is caused by the body's genetic defect in the enzyme responsible for metabolizing protoporphyrin, a precursor of hemoglobin, the protein in red blood cells that transport oxygen. Since people with EPP cannot metabolize protoporphyrin properly, it gets excreted from the red blood cells and ends up in the skin.
"And that's what reacts with sunlight when he goes out into the sun," said Dr. Micheline Mathews-Roth, an associate professor at Harvard Medical School. "That [enzyme defect] causes these local reactions of itching and burning. And some people do get skin lesions looking as if they have burned skin."
This is an experience that Craig Leppert knows all too well. He said EPP is a burden that he's been carrying ever since he was young, stripping him of one of his most cherished passions.
"I grew up playing football from 12 [years old] on," Leppert said. "It was something I just loved to do."
Balancing Football With EPP
Throughout his high school years, Leppert geared up in long sleeves, leggings, a ski mask, a tinted visor and an extra shirt while he ran across the football field with his fellow varsity players. During summer practices, he would wake up at 7 a.m., get burned during practice, come home to lie on ice in front of a fan all night and do it all over again the next day.
Even so, he excelled, becoming captain during his senior year. He was selected as one of the 44 best players in the southern N.J. region, and earned a "First Team All Division" award as well as "Sportsman of the Year." At the time, his college football career seemed within reach.
"I wanted to play in college, and I had a lot of opportunity to play in college," he said.