For 45-year-old Todd Ennen, the pain began more than a year ago.
And it’s never really stopped.
Now, the divorced father of two children is fighting for his life against a rare, painful disease diagnosed in just 27 other people worldwide — an illness so devastating that makes his skin fall off.
The 1988 graduate of Rapid City Central High School had been working the parts counter at McKie Ford for three years when he started noticing bumps and bruises on his body.
“It’s hard to pinpoint when it all started because I’ve always been accident-prone,” Ennen said. “But then, if I bumped my arm, it would smear my skin right off like it wasn’t even attached. It wouldn’t bleed, but even having air hit that open spot was so painful.”
Ennen would do what he’d always done for a simple scrape; he’d put a bandage on the wound for a couple of days. But when he’d remove the bandage, it would take the skin right off his body once again. Then the blisters started.
“I knew something wasn’t right,” he recalled last week. “I would get water blisters on my elbows, my knees, my arms. They ranged in size from an eraser to a 50-cent piece, and they would show up overnight.”
Ennen went to his family physician, who he said examined him, scratched his head and proclaimed, “That’s weird.”
Referred to a local dermatologist, Ennen was prescribed a series of drug treatments, each lasting one to three months. None did any good in combating symptoms of a disease no one seemed able to diagnose. When a different dermatologist thought an auto-immune disease was in evidence, Ennen saw an auto-immune specialist, who told him his ailment was dermatological in nature.
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“I was so frustrated that they couldn’t figure out what it was,” he said.
When his original dermatologist suggested he go to the Mayo Clinic or the University of Colorado, Ennen chose Mayo because he had once been treated there for an unrelated heart condition. After a battery of blood work and a variety of medical tests last March, Ennen said Mayo Fellow Dr. Michael Camilleri put the mystery to rest and told him he had, “epidermolysis bullosa acquisita," an extremely rare condition in which the immune system attacks the fibers that hold his skin on. It is so rare that only 27 people in the U.S. and Europe have ever been diagnosed with this disorder.
“Dr. Camilleri knew what it was the minute he looked at it,” Ennen said. “He had seen at least three or four similar cases in his 30-year career. It felt great that we finally had some kind of an answer to the riddle.”
The specialist placed Ennen on a series of steroid treatments and other medications in an attempt to slow the disease down. Today, Ennen consumes more than two dozen pills each day to reduce his blistering and, on Oct. 13, he’ll return to the Mayo Clinic for further treatment involving infusions of intravenous fluids and medications in an attempt to send his sickness into remission. Each of the treatments will cost $20,000 to $50,000, according to his father, Duane Ennen, who will take his son to Rochester, Minn., for treatment.
“I am really worried about him,” the 70-year-old Ennen said Friday afternoon, choking up at the thought of his son’s ongoing battle. “I’m hoping it doesn’t progress to affecting his internal organs, which I think it could. I just hope it doesn’t advance that far.”
Todd’s stepmother, Linda, and aunt Darlene Davignon have organized a fundraiser to help defray his medical costs. The event is set for Oct. 20 at the local Moose Lodge, and Davignon said last week she was amazed by the generosity of businesses that had donated to the cause even though they had never met Todd.
Family members say Todd, whom they described as a big, fun-loving man who dotes on his two children, Jeren, 12, and Kira, 14, deserves better and they hope his upcoming treatments will allow him some respite from a rare disease from which he cannot escape.
“He’s a good guy with a big heart,” Davignon said. “He’s 6-foot-8, but this has taken him down so far. To have this happen to him is just so unfair.”
“The most ideal outcome is we would all wake up one morning and it would be gone,” his father said.