October 2, 2008

Doctor Seeks Help for ‘Modern-Day Elephant Man’

By Rita Rubin

When dermatologist Anthony Gaspari first saw photos of Dede, the Indonesian fisherman who has come to be known worldwide as "the Treeman," he figured they must be a hoax.

The photos are all over the Internet. They show a man in his mid-30s whose skin is covered with bark-like lesions. And instead of fingers or toes, he appears to have roots sprouting from his arms and legs.

But staffers from Discovery Health, the cable channel, assured him that Dede was real. Suspecting that the man might have a rare pre-cancerous skin condition that Gaspari, chair of dermatology at the University of Maryland, had described recently in a scientific journal, they invited him to meet with Dede.

Intrigued, Gaspari twice has flown nearly 24 hours from Baltimore to Jakarta and then driven three hours to Bandung. From there, it was an hour-long car ride, a half-hour boat ride across a lake and a half-hour hike to get to Dede's rural village. The first trip was in June 2007, the second this past March.

On Sunday at 9 p.m. ET/PT, Discovery Health will premiere Treeman: Search for the Cure, which documents Gaspari's efforts.

"In some ways, it's the modern-day Elephant Man," says Gaspari, referring to the 19th-century Englishman named Joseph Merrick. "On the one hand, you're horrified to see how badly disfigured this individual is. Then on the other hand, how could this happen? There's a curiosity factor."

In person, Gaspari could see that Dede did not have the rare skin disorder that the Disovery Health team had suspected. A molecular analysis of biopsies of the growths on his body found they were caused by the human papillomavirus, or HPV.

Some HPV types cause genital warts, and some can lead to cervical cancer. But scores of others cause common warts, the harmless little growths that sometimes pop up on the knees, face, fingers or other parts of the body that are likely to be injured.

In people with healthy immune systems, common warts eventually clear up on their own. But Gaspari found that Dede has chronically low levels of disease-fighting white blood cells called CD4 cells. Low CD4 counts characterize AIDS, but Dede repeatedly has tested negative for HIV, the virus that causes AIDS, Gaspari says. Instead, he says, Dede, who has otherwise been healthy, must have inherited a rare flaw in his immune system.

Dede's is probably not the first such case in the world, Gaspari says, but "we just don't see patients living that long and going untreated that many years (thought to be 20) with that severe disease."

Ideally, Gaspari says, the Indonesian government would allow Dede to come to the USA for treatment with drugs such as antiviral medications to help his immune system fend off the HPV.

The next-best scenario, he says, would be for the Indonesian doctors to bring more specimens from Dede to his lab in Baltimore, where they could work together to identify his underlying genetic mutation and develop appropriate treatments. (c) Copyright 2008 USA TODAY, a division of Gannett Co. Inc. <>