By John M. Glionna, Los Angeles Times, July 26, 2010
KAMPUNG BUNDAR, Indonesia — Inside a dimly lighted living room in the heart of the Javanese forest, Dede Koswara blankly examines his bulky hands, which have morphed to the size of catcher’s mitts. He shuffles along on blackened, bloated feet, a prisoner of his own mutinous body.
For years, the slender construction worker watched helplessly as his limbs broke out in a swath of grotesque bark-like warts that sapped his energy and limited his mobility.
At one point, he seemed to sprout contorted yellow-brown branches 3 feet long. Koswara, it appeared, was becoming half-plant — turning into the verdant green jungle around him.
His mysterious ailment cost him his marriage, career and independence. Begging for coins, he ended up in a traveling freak show, enduring stares, known as the Tree Man of Java.
“They say I’m not human,” the 39-year-old says softly. “Whatever they want to say, that’s fine. I guess I am a Tree Man.”
Then he got lucky. In 2007, after Koswara’s picture was posted on the Internet, a U.S. dermatologist consulted in the case determined that he suffered from a bizarre medical double-whammy:
Koswara, he said, has the common Human Papilloma Virus, a condition that usually causes small warts in sufferers. But Koswara has a rare immune deficiency that allowed the lesions to run wild, covering his face and eventually transforming his limbs with rootlike barnacles known as cutaneous horns.
“I’d never seen anything like it — under all those warts was the outline of a human being,” said Anthony Gaspari, chairman of the department of dermatology at the University of Maryland’s School of Medicine, who traveled here to examine Koswara.
Gaspari thought he could help. Working with local doctors, he designed a drug treatment program. Last year, Indonesian surgeons used an electric saw to cut 13 pounds of warts and decaying matter.
The results were astounding. For the first time in a decade, Koswara could make out his toes and fingers. Once again able to hold a pen, he began playing Sudoku and pecked out text messages on a cell phone. There was even talk about returning to work.
But complications developed when Koswara fell victim to a medical turf battle. Indonesian health officials suspected Gaspari of taking blood and tissue samples abroad without authorization to use them for commercial purposes. Although Gaspari later smoothed over the misunderstanding, he has since left the medical team.
Since then, Koswara has suffered yet another setback. After months in remission, his disease has begun to wage a counter-assault, the warts returning to cover his body at a faster rate than ever before.
Dede Koswara was born healthy. But at age 10, after he fell and scraped his knee in the forest, small warts sprouted around the wound. Slowly, they spread to his feet and hands.
Once, a friend helped him cut off one of the larger warts, causing profuse bleeding before the unsightly growth returned weeks later. Without money for treatment, Koswara was forced to endure gawking villagers.
“The stares made me so ashamed,” said Dede’s father, Ateng Koswara, 73, a corn and rice farmer. “I asked myself, ‘Why is this happening to my family?’ Dede is a good boy.”
The young Koswara, a quiet, studied man, tried to lead a normal life, earning a reputation as a craftsman who renovated houses. At age 18, he married a village girl and had two children.
But the warts continued to grow. As they thickened, his skin grew as rough as tree bark. While they didn’t hurt or itch, they gave off a sickening odor.
They also limited his mobility. Eventually unable to even hold a hammer or walk a few steps without tiring, Koswara lost his job. His wife of 10 years walked out soon afterward, taking their son and daughter.
Koswara moved back home, where his parents bathed him each day and his mother made him shirts with zippers so he could dress himself with his clawlike hands.
In 1996, Indonesian health officials paid for his first surgery. Enduring a series of painful procedures, he remained hospitalized for 16 months.
With no cure available, baffled doctors released Koswara to his village, where the warts worsened, spreading to his face.
One day, while he begged for coins in the nearby city of Bandung, Koswara met a carnival owner who hired him for a traveling freak show. He joined the man with the fish scales and the woman whose body was covered with bumps.
“We encouraged each other,” he said of his fellow circus attractions. “People stared, they were afraid of us. But it was better than being at home, wasting time.”
A photo of Koswara posted on the Internet attracted the attention of documentary filmmakers, who consulted Gaspari to provide an answer to the medical mystery.
Under Gaspari’s direction, doctors used chemotherapy to bring the virus under control — but the regimen was cut short after Koswara’s liver began to fail.
“I give Dede a lot of credit,” Gaspari said. “He wasn’t angry. He wasn’t suicidal. He was just sad. But he trusted me, another outsider who had come to stare and take pictures of him.”
After Gaspari left the medical team, Indonesian surgeons tried a second round of surgeries last year. Gaspari said he’s not surprised the warts have returned, since removing the growth is only a short-term fix for the symptoms of the disease.
The real cure, Gaspari said, might involve a bone marrow transplant or other procedures not readily available in Indonesia.
“There are things I still want to do for Dede, but my hands are tied,” he said. “The government seems to view me as some outsider butting in where I don’t belong.”
Indonesian health officials are reluctant to let Koswara travel abroad for care, fearing he would become exploited as a medical research project.
Said Agus Purwadianto, head of the research and development at Indonesia’s health ministry, “We don’t want him treated like a guinea pig.”
Kowara’s knows this: For a few months, he tasted the fruits of independence without the cruel stares — only to have his freedom and dignity once again snatched away by a disease he does not understand.
“My body has again betrayed me,” he says, “but what can I do?”
His hands and feet mutating, Koswara is back to wearing the special zippered shirts, relying on family for his daily baths.
“For a cure,” he says, “I’d go anywhere in the world.”
For now, Ateng Koswara struggles to keep his dream alive.
“I want him back with me, working side by side in the fields, helping with the harvest,” he says. “But when I look at him, I wonder if that will ever come true. He can’t even hold a glass of water.”
