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.
EPP Sufferers Burn In Sunlight
But while playing in the U.S. Army All-Shore game during his senior year of high school, he experienced an extremely excruciating burn that left him hiding out in the shade underneath the school bleachers, attempting to lick and blow on his own face to relieve himself of the pain of a burn.
That's when Leppert knew that his time on the field was up.
"It was kind of a letdown to know that I physically couldn't play the sport even though I was capable of doing it," he said. "It was hard to say goodbye, and I was basically making the decision not to play a sport [anymore], the thing that you love for your entire life."
Now, as a sophomore in college, Leppert is pursuing other dreams. He's majoring in television, radio and film at Syracuse University and wants to be a director. However, he said going to a large college with an undergraduate population of more than 13,000 students comes with its own set of difficulties.
Instead of walking to class, Leppert said he "shadow jumps" to class, quickly walking from one patch of shade to another patch of shade to avoid hitting any excess sunlight.
"A lot of people have no idea what EPP is and have no idea who you are, and all they see is a kid walking around on the one day it's sunny outside in a hoodie," he said. "So it's just kind of hard because … I've been burnt at school and look kind of disfigured. And people probably don't even mean to be mean or rude, but it's hard knowing that you're the odd man out."
But he said since his freshman year, he's developed thick skin. In fact, he said his social life has skyrocketed. He was recently elected president of his fraternity, Sigma Alpha Mu.
"They [his fraternity brothers] call me Superman," he said. "They kind of joke that I do nothing wrong, like I'm the all-American kid and I have one disadvantage and one weakness and that's sunlight, kind of like Superman's kryptonite."
Dr. Mathews-Roth has completed a number of studies on EPP throughout the years and said there is not a cure for the disease just yet, although doctors have made some headway in recent years.
"Collaborators and I were able to cure the genetic disease, cure EPP, in mice," Dr. Mathews-Roth said. "But we certainly are not able to do that yet in people."
However, her previous studies have shown that there are ways to deal with symptoms of EPP. She said based on her observations, the intensity of the sunlight and the darkness of a person's skin dictate the severity of the burn, so one way to therapeutically deal with EPP is to go tanning.
"Black people have very much less reactions to visible light than white people do," Dr. Mathews-Roth said. "And it also takes them a much longer time to develop their symptoms than white people do. It's the melanin pigmentation in their skin that gives them this protection."
Dr. Mathews-Roth explained that EPP reactions are caused by long wavelentgh sun rays, of about 400-450 nanometers.
Tanning beds produce shorter wavelengths, usually maxing out at 320 nanometers. In an effort to help people with EPP, Dr. Mathews-Roth encourages tanning at tanning salons, a 'treatment' that Leppert welcomes.
"I try to go a few times a week," he said.
A tanning salon is located near his college campus, so Leppert often pops into a tanning booth for an average of nine minutes per visit. Both Leppert and Dr. Mathews-Roth acknowledged the irony of going to a tanning salon as a healthy measure, but said it's all about balance and awareness.
"What I always tell people with EPP is that if you use the sun tanning booth, by all means go to your dermatologist and have him check your skin every six months because tanning booths, if they are overused, can indeed induce skin cancer," Dr. Mathews-Roth said. "But on the other hand, tanning booths induce suntans, and that's what's going to protect you against EPP, so it's a thing you have to be very careful with."
In addition to being cautious in the tanning booth, Leppert has to be mindful in college as well since alcohol consumption can be more dangerous for certain people with EPP. According to Dr. Mathews-Roth, if people with EPP also have liver problems they can more easily develop liver failure.
"Since EPP people accumulate protoporphyrin in their blood because of the defect in the enzyme, the liver works to clear our protoporphyrin," she said. "And for some people, for unknown reasons, their livers can't work as well in clearing pathogens from the blood."
Her general suggestion for all people with EPP is to stay clear of alcohol entirely, a warning that Leppert knows all too well.
"My grandmother always gives me this speech about how I should never touch anything with any percentage of alcohol or anything that would do anything to my liver," he said.
However, Leppert said he won't allow his fear of EPP dictate his life decisions.
"I like to enjoy a good Jack and Coke once in a while, but I'm not going to pound beers to the face," he said. "I always said that I never want to be in the position where I regret anything … I would never want to be 30 and wish I would have lived it up a little in college and acted normal in college instead of being so afraid of EPP and have EPP run my life."
ABCNews.com contributor Marlei Martinez is a member of the ABC News on Campus program in Syracuse, N.Y.