By AARON KRAUSE
Tribune staff writer
TIPTON -- Blistering comes as naturally as breathing for 34-year-old Tipton resident Bruce Gunn. However, he has never suffered burns in a fire. Still the blisters form nearly every day on skin that won't stick to his body.

Gunn suffers from a rare and little- known skin disorder called Recessive Dystrophic Epidermolysis Bullosa (EB). Those afflicted were not born with their second layer of skin, and as a result they shed their skin and develop blisters all over their body, Gunn said. About 50,000 to 75,000 U.S. residents have been diagnosed with the disorder, and about 300,000 people worldwide. There are three forms of the disease, and Gunn has a severe form of it.

Still, even though Gunn has a disease hardly anyone's heard about, even though people tell him he resembles a mummy with dressings covering about 90 percent of his body, even though his fingers are webbed together, resembling two small mountain tops, even though many believe what he has is contagious, even though a tap on his arm could result in blisters, Gunn said he will not let any of this stop him from trying to fulfill his dreams.
"I enjoy life and what I can do," said the 5-foot 4-inch, 104-pound Tipton resident. "I don't worry about what I can't. You got to work hard to achieve. I just took my instincts and went with it."
When Gunn speaks, determination fills his voice. You get the sense that he doesn't let his condition control him.
As a result, Gunn said that he's achieved things that many people with EB would hesitate to even try.

Behind the wheel

Gunn recalled the time he decided to learn to drive. He said his father had doubts as to whether Gunn would ever drive. Gunn, though, sought driving lessons elsewhere. He took lessons through Crossroad Rehabilitation Center -- and it only took about a dozen lessons before he was ready to take the test, he said. He still recalls the date and day: Friday, July 7, 1988.
"That was the biggest day of my life of independence," Gunn wrote on his Web site. "My dad didn't think I was capable of driving, but I showed everyone."
Gunn currently makes a half-hour commute to work every day -- with some modifications -- such as a 5-inch mirror, a steering wheel handle allowing for a better grip and a key hold. The modifications make it easier for him to drive without blistering more than he does, Gunn said.

Works at nonprofit

Gunn may resemble a mummy with dressings covering the blisters all over his body, but he doesn't sit home thinking about it. Gunn works part-time at Janus Developmental Services Inc., a nonprofit agency in Noblesville, that helps children with developmental disabilities. Gunn has worked at the agency for about 11 years, and said he gets along just fine with his colleagues.
"They treat me normal, like everyone else," Gunn said.
Gunn, in fact, stands out at work, but not in a bad way, he said. He sits at a desk in the middle of a hallway, allowing everybody to get to know him. He added that he feels it's important for him to have open conversations with people about his condition.
Julie Emswiller, development director at Janus, has been working at the organization for only about two months. Still, she said that she's learned a lot about Gunn just from speaking to him and browsing his Web site.
"I was very taken by his Web site," she said.

Emswiller said she had never heard of EB before meeting Gunn. Meeting him, and talking to him, made her realize that it can be difficult to get people to donate to a disease not high profile in nature.
Mostly, Emswiller said she's impressed with Gunn's outlook on life and his condition.
"Oh, it's incredible," she said. "He's probably the most optimistic person I've met in a long time. He's quite a treat to work with."
Barb Klopp, who has worked at Janus for 25 years, said that Gunn also has a positive work ethic.
"He doesn't expect things to just be handed to him," she said, adding that he comes to work every day. "I'm amazed that he can do as much as he does."
Gunn is also a joy to talk to, said Klopp, who has known Gunn for about 10 years. "He's just a great guy," Klopp said.

Lives alone

Gunn has lived with his parents for most of his life, but when he started dating, he said he wanted to change that, and asked Habitat for Humanity to build him a home, which is handicapped accessible.
"That was my personal investment, because I wanted to be independent," Gunn said. Habitat, he said, requires clients to put in 250 hours of work on their future home, but Gunn said that organization officials excused him from physical labor. Instead, he did office work, took part in fund-raising events and performed general volunteer work for Habitat.
For Gunn, living alone means applying new dressings to his skin daily, and rinsing off old ones. Routine events, such as taking a shower, can take several hours for Gunn and others with EB, he said.
Gunn said that the purposes of the dressings are to heal his wounds, make sure his clothing doesn't stick to them and to make him comfortable.
"I feel naked without my bandages," he said, adding that's because he's missing a second layer of skin.
The wounds, he said, can hurt, depending on how big they are, or if he's leaned on them. He added that although he has a high tolerance of pain, a few times a year he suffers from pain severe enough that he has to take painkillers.
But even though Gunn's blisters hurt at times and his fingers are webbed together, he said he can pick things up, and do just about anything others without his condition can do. He can still recall the first time he walked, in fact. It was a Sunday morning, and his father was reading the Sunday paper. Suddenly, dad looked up and saw his son walking while holding furniture.
"Dad called mom into the room, but she wanted to run over before I fell and hurt myself. But dad said to leave him alone, that I was doing fine," Gunn wrote on his Web site.

All's not been rosy

Even though Gunn has managed to find a job, live alone and learn to drive, he has had to endure severe infections and long hospital stays. From 1997 to 2001, for example, Gunn noticed a sore on his right ankle that didn't heal, had a stiff neck and felt run-down. He went to his family doctor, who admitted him to the hospital. Gunn found out that his hemoglobin, a component of a person's red blood cells, was 7.5 (a man's normal hemoglobin 13.1-18.0 g/100 ml).
Meanwhile, the sore on his right ankle started getting bigger, and his infection wasn't improving. With treatment, the infection got better, but the ulcer did not. As a result, Gunn saw a dermatologist, who performed a biopsy, which found cancer.

Another doctor told Gunn that the cancer was serious, and that he could lose his leg.
"From the time I saw the plastic surgeon and my surgery date, was the longest three weeks of my life," he said. "I had to decide to lose my leg, because nobody could tell me us EBers could survive radiation and chemotherapy, because I'm not that big, and don't weigh very much either."
Gunn ended up having surgery, which found that doctors caught the cancer just in time. In all, he spent five weeks in the hospital, underwent four days of radiation and three operations. He also had to go from working full-time to part-time. He estimated that over the last four years, he's had to pay $6,000 to 8,000 in hospital bills. And that only includes his end, not his insurance company's, Gunn added.

Involved in support group

Gunn's cancer is currently in remission, and in addition to working, he keeps busy through an EB support group, whose members communicate via the Internet.
"That keeps me going, because I can share my story" with other EBers, Gunn said. "It's blossomed into one huge family."
He said that he's tried to convince parents of children stricken with EB to let them live independent lives as much as they can.
"I'm grateful and blessed that I have you all as my 'extended family,'" Gunn wrote on his Web site.
Dr. Steven Wolverton, one of Gunn's dermatologists, said that he's impressed with Gunn's outlook.
"His attitude is incredible," Wolverton said. "[Gunn is] one of the most inspiring people I've met."
Speaking of doctors, Gunn said that one of his doctors told his parents that he wouldn't live past 4 or 5. Like he's done with other people, though, Gunn proved him wrong.
"Doctors," he said, "don't know everything."

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