Two-and-a-half years after University of Maryland Medical Center Chief of Dermatology Anthony Gaspari first laid eyes on an Indonesian villager named Dede, the doctor is still trying to solve the riddle of this, the most curious case of his career.
He has traveled twice to Indonesia, made two British TV specials, and endured heat from a foreign government, but Gaspari suggests there is much work to be done. "I'd say we're halfway there," he says.
Still, halfway is pretty far from where Dede was when Gaspari first met him in a remote village south of Jakarta. Suffering from an unusual illness that caused bizarre bark-like growths to sprout from his hands and feet, 36-year-old Dede Koswara was depressed, deformed, and ostracized. He had lost his job, his wife, and his ability to perform the simplest of physical tasks. Dubbed "The Tree Man," he sometimes worked in a local freak show to earn a living.
In 2007, Dede came to the attention of Discovery Channel UK, which approached Gaspari with a proposition: Would he travel to Indonesia to try to figure out what was causing Dede's deformity?
Gaspari was no stranger to unusual cases—his expertise is in allergy- and immune-related skin disease—but he'd never treated a patient with such a severe deformity. Nor had he ever traveled so far from home to practice medicine. "That was one of the reasons that I was interested in doing it," says Gaspari. "It was a new experience for me. It was a challenge. And they were filming it, to boot."
Before he left, Gaspari received photos and a bio of Dede, whose problems began with a small growth on his knee when he was 15. Soon more growths appeared—in addition to those on his hands and feet, Dede had a carpet-like growth that ran from his wrists to his elbows and ankles to knees, and more on his body and face.
The photos were dramatic. "I had never seen anything so wild," says Gaspari, who treats everything from run-of-the-mill acne to rare skin conditions. "My first reaction was, 'Is this real or a hoax?'" Still, Gaspari had a hunch that the root of Dede's problem was something common. "It looked like a horrible wart infection," he says.
A solid diagnosis required a medical examination, for which Gaspari and a film crew travelled more than 24 hours by plane, car, small boat, and finally a 45-minute hike, to a remote cluster of bamboo huts. In Dede's village, Gaspari and the Discovery team were the subject of intense curiosity. "There was a swarm of people following us," says Gaspari. "People standing outside, peeking in the windows."
Inside Dede's sweltering, dimly lit home, Gaspari got his first good look at his patient. Up close, the deformity proved even more dramatic than on paper. "It's one thing to see the pictures, but to see a live person so horribly deformed—it was a very memorable experience," says Gaspari, who quickly ruled out any possibility of a hoax.
With the help of interpreters, Gaspari got the details on Dede's medical history. "He had been connected with the health care system in Indonesia," says Gaspari. "They tried to remove some growths in the '90s, but they grew right back. He got frustrated, and he couldn't afford the treatment, so he retreated to his village."
Without treatment, Dede's body was overrun with warts. Not only was the appearance unsettling, but the growths were heavy—eventually accounting for about 15 percent of his body weight—and made it impossible for Dede to use his fingers.
Gaspari spent five days in Indonesia, collecting blood and tissue samples from Dede and watching his patient interact with friends and family. "He's a very gentle soul," says Gaspari. "I never saw any anger or resentment. He said, 'Allah has given me this for a reason.'"
Eventually, the blood work and tissue samples confirmed his diagnosis. "It turned out to be HPV2 that caused his infection," says Gaspari. "It's a common wart virus that all of us have been exposed to and were able to contain and control." But Dede's body hadn't controlled the virus, due to a weakness in his immune system. "In him, it flourished and grew and advanced to the horribly disfiguring state."
The only mystery that remained was why Dede's immune system wasn't working properly. Finding the answer would prove to be the biggest challenge, says Dr. Ronald Goldner, a colleague of Gaspari's. Goldner wasn't directly involved in the case, but frequently talked with Gaspari about Dede's condition. "[Gaspari] was the right person to do this," says Goldner. "This is his expertise."
But with limited tissue samples and a patient 10,000 miles away, an answer remained elusive. Gaspari reported his findings to his counterparts in Indonesia and to medical colleagues at the University of Maryland. Then the Discovery show aired, bringing Gaspari international attention—he still gets several calls a month from people interested in Dede's case—and a little grief.
"There was a reaction from the Indonesian government—I was over there without their permission and they were upset," he explains. "When I told them what I did, they were fine with it." By the time Discovery Channel UK suggested a second segment in early 2008, Gaspari had an official invitation from Indonesia.
By then, Indonesian doctors were once again on the case. "Dede was in a hospital in isolation for about a year," says Gaspari. "They did a lot of surgery on him, some of which was very helpful." Doctors removed warts from his face, body, and hands, allowing Dede to move his fingers for the first time in 20 years. Before surgery, Dede couldn't pick up objects with his fingers. "After the surgery, he could write and text-message," says Gaspari. "He had a mobile phone."
Gaspari didn't agree with the Indonesian medical team's next plan: to graft skin from Dede's back and buttocks onto his hands and feet. As an alternative, he suggested attacking the virus with a powerful antiviral drug. The catch: The drug wasn't available in Indonesia. Dede's doctors would have to wait six months for it to arrive.
In the meantime, the Indonesian medical team went ahead with the skin-graft surgery, despite Gaspari's concerns. But in the operating room, they hit an unexpected snag: Nearly 20 years of immobility in his hands had caused osteoporosis so severe that during surgery Dede's bones began to collapse. "They stopped the surgery, fortunately," says Gaspari, who by then was back in the United States.
When it finally arrived, the antiviral drug would prove no more effective. It was so toxic and Dede so frail—he had tuberculosis and other health issues—that after two doses, he had to stop taking it.
Today, Dede is out of the hospital and in better condition than when Gaspari first met him. But there's bad news: "The warts are growing back," says Gaspari. That comes as little surprise, he says, since Dede's treatments so far haven't addressed the underlying problem. "Fundamental to the warts growing is his immunodeficiency."
Gaspari didn't take place in a third Discovery Channel segment on Dede, but he's still in contact with the Indonesian doctors and has ideas for a new approach that would use existing drugs to stimulate Dede's immune system. "I'm still committed to helping him," says Gaspari, who plans to visit Indonesia again to study Dede's case more closely, and hopefully find a treatment that works. "We've learned a great deal about what's going on, but there's more to be done."