Outside it’s a cloudy and unseasonably cool day. It’s a day when Craig Leppert can breathe a little easier. Wearing a hunter green hooded sweatshirt and a pair of old jeans dotted with white paint stains, Leppert doesn’t appear any different than other students milling around the first floor of Newhouse I.
Hot, clear and sunny days are another story. Those are the worst. But even on those days, his wardrobe doesn’t change much. Wearing a hooded sweatshirt and long pants, he sticks out like a sore thumb.
Today, however, the bright red hue and scabbing on the tip of his nose is the only giveaway that something is a bit different about Leppert. It’s been three weeks since he drove to Philadelphia and was exposed to the sun’s rays for just a few minutes along the way. But the scarring on his nose looks more like he spent a weekend at the beach.
Leppert runs his fingers over the scab on his nose and is reminded why he has to dress the way he does. He has Erythropoietic Protoporphyria, or EPP — a rare skin condition where hemoglobin is rejected by the liver and stored in the skin. When Leppert’s skin is exposed to UV rays, a reaction occurs that causes pain equivalent to hot wax being poured on his body.
“It sucks because EPP is the type of thing, if you cover up and you adapt like I feel like I’ve adapted, you go months without a problem and you’re like, ‘Wow, people actually forget that you’re allergic to the sun,'" the 19-year-old said as he continued to brush at his nose. “But then something like this comes, and you feel isolated."
“It’s not something where I’ll actually come out and be like, ‘Hey, my name’s Craig. I’m a vampire.’ I keep it hidden unless it comes to the front and has to be brought up.”
Those hot, clear and sunny days are usually when it has to be brought up, as Leppert’s warddrobe is more appropriate for a winter day in Syracuse. It’s even more prevalent when Leppert walks to class and has to do what he calls “shadow jumping.”
With his hood wrapped around his head to keep his skin out of the sun’s rays, Leppert will walk in the shadows of trees and buildings to get where he needs to go. When he reaches the end of one shadow, he sprints to the next, and so on.
“He doesn’t really put himself in situations where he can get burned,” said Dan Marcus, a Syracuse freshman who was the first person Leppert met when he got to campus. “He just joined the fraternity Sigma Alpha Mu. When all the brothers are outside playing Frisbee, football, or on the front porch... he can’t do that.”
Leppert was born with EPP, but his parents didn’t know there was anything wrong with him until they took him to a community swimming pool when he was 18 months old. Outside and exposed to the sun, Leppert began screaming in agony. His tiny hands attempted to rip the skin from his arms and face. The burns were severe. The next day, his hands looked like little boxing gloves and his face was swollen and red.
Because EPP is so rare, it took doctors years to correctly diagnose Leppert. At first, they thought he was allergic to chlorine, but he had the same type of reaction when his parents let him play in a kiddie pool in the yard. Then, doctors thought he had an allergy to some kind of laundry detergent.
It wasn’t until Leppert moved to Albany when a doctor thought Leppert might have EPP. Leppert was shocked to learn how rare it is.
“There’s about, give or take, 300 people in the world that have it. I take it with good heart,” Leppert said. “I call my people Spartans. I’m King Leonidas.”
These days, he has found support for EPP on Facebook.com as most of those afflicted with it belong to a group on the social networking site.
The Face of EPP
Through it all, Leppert has maintained his sense of humor. He has also emerged as the face of the condition. A few years ago, Leppert and his family were featured on a Discovery Channel show called “Mystery Diagnosis,” a television show that profiles people dealing with the diagnosis of rare and uncommon conditions.
In October, Leppert received a phone call from a producer of the Dr. Oz show. In November, the family appeared on the show to talk about EPP. Leppert’s sister, Nicole, also has the condition.
Leppert suffered a severe burn (pictured here) on his nose several weeks ago during a day trip to Philadelphia. (PHOTO: Matthew Ziegler)
Back in high school, Leppert was outspoken about EPP to the point that it sparked major change in the small community of Manchester, NJ. Despite his need to keep out of sunlight, Leppert played several sports growing up.
It figures that the one he was best at took place outside.
Leppert was a star football player at Manchester Township High School after moving from Albany, but his small high school didn’t have lights on its football field. For years, the community tried to convince the Board of Education to install lights, but the proposal was always turned down.
Then, Leppert came along. During games, the school would have to set up a large tent on the sidelines to keep Leppert out of the sun when he wasn’t on the field. For a community that wanted to be able to play football games at night, there was outrage when they learned of Leppert having EPP and being forced to play outside during the day.
“I started off just explaining my condition to a local newspaper and gradually, it got a little bit bigger and a little bit bigger,” Leppert said. “It just skyrocketed to the point where we raised $200,000 in six months.”
The small community got the lights it wanted thanks to Leppert. His involvement even earned him several spots on major news networks, including a profile on TSN, the Canadian version of ESPN.
His openness and willingness to champion awareness for EPP, however, conflicts with his feelings about how large a role the condition should play in his life.
His father, Mike, always told him that if he can talk about himself to someone he doesn’t know and EPP is the fifth subject that comes up, he’s won.
“He should be a role model for everybody,” freshman Marcus said. “He never really asks for much.”
Leppert doesn’t see himself as a role model, even though his personality and strength — despite the daily reminders of what makes him different — put him in a position to be one.
If he’s someone people look up to, he accepts that role. He sees it as a chance to teach those around him about what’s really important in life.
“Without pain, without sacrifice, you have nothing,” Leppert said. “So I feel it’s something that has molded me into the person that I am. It’s like building blocks to the person I’ve become, but in no way is it anything that can define me.”
