Uprooting a mystery

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At first, he thought it must be a hoax.

The man in the picture didn't have hands at the ends of his arms; he had what looked like tree branches - two masses of tangled, overgrown bark.

In more than 20 years of practicing medicine, Dr. Anthony Gaspari, chief of dermatology at the University of Maryland Medical Center, had seen terrible skin conditions, but he'd never seen anything so incredible or so bizarre.

"It was just so outrageous, so unusual, I wasn't convinced the hands were real," the doctor remembers. "I thought maybe they were somehow taped on."

A crew from Discovery Health, part of the Maryland-based Discovery Communications, had sent Gaspari the pictures along with an invitation. Would he be willing to fly to Indonesia and help them make a diagnosis?

Despite his doubts and concerns about Indonesia, a country in Southeast Asia known for terrorist activity, he boarded a plane in June 2007, beginning an odyssey that would take him to the other side of the world, drop him into diplomatic negotiations with his peers in another country, spawn two television documentaries and introduce him to a man who's fostered a sense of hope in the face of the most extreme adversity.

Just getting to the patient was an adventure.

Gaspari, who is also chairman of the department of dermatology at the University of Maryland School of Medicine, had to travel 10,000 miles. It started with a flight from Baltimore to Chicago and then on to Beijing. From Beijing, he flew to Jakarta, Indonesia. From there, he had a three-hour drive to the city of Bandung, the closest large city to the crew's rural destination.

After a night's rest in Bandung, Gaspari and the Discovery film crew drove for an hour to a lakeside village, took a half-hour boat ride across the lake and then hiked up a long, dirt hill in tropical heat to finally reach the patient: Dede Kosawa, a 35-year-old known as the "Treeman."

"You couldn't tell the top of his hand from the bottom," Gaspari says. "Warts carpeted his body. From his elbow to his fingertips, you couldn't see a spot of skin."

Kosawa's life had changed after he scraped his knee as a teenager and warts began to appear around the wound. The warts then spread across his entire body, turning, after 20 years without much intervention, into a disfiguring, debilitating condition. He lost his job and his wife and he depended on his family to dress him, feed him - even carry him.

Though Discovery Health's medical staff believed Kosawa had a rare, cancerous skin disorder, Gaspari was almost certain, just looking at the pictures, that it was something else. Because the doctor had traveled with needles, numbing medication, topical antibiotics, dressings and tubes to draw blood, he worked for about a week, traveling every day from Bandung to get samples of Kosawa's skin and blood to test both in Baltimore and a Bandung lab.

Gaspari found that what afflicted Kosawa was nothing more than typical, common warts. But what would be a mere nuisance for a normal person raged in Kosawa because of a quirk in his immune system.

His warts looked like branches because, left unchecked, they grew severe, woodlike, cutaneous horns.

After Gaspari got back to Baltimore and studied the results, he sent Kosawa a letter through translators in September 2007 describing the diagnosis and a possible treatment. The doctor promised to find Kosawa donated medicine and to continue consulting with his Indonesian medical team.

"My prayers are with you," Gaspari wrote.

The documentary based on that trip aired early this year - but the drama was only beginning.

Among viewers worldwide was the president of Indonesia, who demanded that something be done for Kosawa. Without warning, an ambulance showed up at Kosawa's village and whisked him to a hospital in Bandung.

Discovery called again, asking Gaspari to travel back to Indonesia to stop doctors there, who sought to remove all the damaged skin from Kosawa's hands and replace it with skin from his back and buttocks.

Gaspari agreed, believing that a skin graft would not only open the door to dangerous infection and end any chance of Kosawa regaining normal hand function, but wouldn't even cure the underlying issue, the infection itself.

This phase of the journey became a second documentary that began airing this month on Discovery Health.

Since Gaspari last traveled to Indonesia, Kosawa's case had become a major news event in that country, largely because of the Indonesian government's apparent desire for publicity. Hordes of cameras followed the patient and medical team, even into Kosawa's tiny hospital room.

"Dr. Gaspari was taken aback by the level of press interest," says Rachel Oakes, who directed Discovery's documentary. "It was on the level of Britney Spears. Dr. Gaspari's arrival was big news."

Before Gaspari arrived, the Indonesian doctors had removed the bulk of the warts and horns - 14 pounds of them. They were preparing to do the skin grafts next.

Oakes says the negotiations between Gaspari and the Indonesian doctors were fascinating - friendly yet tense. Gaspari pushed for chemotherapy and some other drug treatments instead of the more radical skin grafts.

"It was going to take a lot of diplomacy skills on Dr. Gaspari's part," Oakes says.

The Discovery cameras catch Gaspari telling the head Indonesian dermatologist: "Skin-grafting the hand is the very last resort." He persuaded the Indonesian doctors to defer the grafting but they only agreed to wait a month. Once back in Baltimore, Gaspari rushed to find a pharmaceutical company who would provide the $10,000 chemotherapy drugs for free.

The drugs arrived in Indonesia, but not before the doctors there performed a skin graft on one of Kosawa's hands. But they did start the chemotherapy treatment, which is continuing.

Kosawa has returned to his village where, for the first time in more than a decade, he's independent and has hopes of finding a job and of marrying again.

Gaspari has been keeping in touch with the Indonesian doctors through e-mail and videoconferencing.

Since the documentaries have aired, he's been flooded with correspondence and calls - some from the curious who want more details, some with offers to help, and some from patients who, like Kosawa, thought they were out of hope until they saw what Gaspari could do. Patients in China and Sweden have already planned trips to Baltimore to consult with the doctor they saw on television.

Gaspari says he'd go back to Indonesia if Kosawa needed him. He said he'd like to bring the patient to Baltimore for more comprehensive treatment and study.

"Our work is not done. He's going to have this condition for the rest of his life," Gaspari says. "I'm committed to helping him."

doctor's letter Excerpt from the letter Dr. Anthony Gaspari sent from Baltimore to Dede Kosawa in Indonesia: "Even though you are afflicted with a weakened immune system, and are likely to have this condition your entire life, there is hope for treatment. With your permission, I will contact [your doctors in Indonesia]. I will recommend to them long-term treatment. ... I will attempt to obtain this medicine from a pharmaceutical company on a compassionate basis, so there is no cost to you for this expensive treatment. With their collaboration and assistance, I will plan a treatment regimen that potentially will improve your condition greatly. Our goal is to cause a significant regression of most of your warts to the point whereby you are able to use your hands. ... I wish you the best in dealing with this difficult health condition."

Copyright © 2014, Los Angeles Times
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