Chandra Wisnu, the Indonesian man known as the "Bubble Skin Man," has spent the last 25 years trying to find a cure for the bizarre condition that caused bubble-like tumors to erupt on his body.
Now, at last,he may have found the cause, thanks to Maryland-based dermatologist Anthony Gaspari, and while no cure exists, he may be able to improve his quality of life.
Gaspari flew to Indonesia to examine Wisnu and his family.
The diagnosis: an extreme case of Neurofibromatosis type I (NF-1), a tumor disorder that is caused by a gene malfunction and causes non-cancerous lumps.
The disease is genetic and affects up to one in 2500 people.
The lumps first appeared on Wisnu when he was 19, spread to his back by age 24 and covered his entire body by the time he was 32.
The 57-year-old Indonesian man has been going to doctors and alternative healers for years. However, until now he had been unable to find out the cause of the tumors -- or to get relief from the itching.
"One alternative healer cut out fatty tissue and told my father to bury it under a banana tree," Wisnu said on "Bubble Skin Man," a documentary debuting June 20 on TLC.
"There was no improvement."
BUBBLE MAN GALLERY (Story continues below)
The Life And Times Of The Bubble Skin Man
Along with the strange looks he received from strangers, Wisnu said the worst part was the painful itching that would occur in the hot, sticky tropical heat. It was so intense he could only feel comfort after poking the lit end of a cigarette on to the trouble spots.
After a while, Wisnu tried to get philosophical about the condition.
"I try to keep busy and then I can forget about it," he said. "Now I try never to look at myself in the mirror so I can forget what I look like.
"When people stare at me, I tell myself, it's because I am good looking. I always try to look on the bright side."
That became more difficult in recent years as two of Wisnu's kids, Martin and Liz, had similar tumors appear on their body. He was determined to find a solution to his ailment -- or at least an explanation.
Although there is no cure, Gaspari said there are treatments that can improve the quality of his life as well as experimental treatments that may prevent his kids' problems from getting as bad as his.
Wisnu is happy to have some relief, but had hoped for a face transplant.
Gaspari considered that possibility, but advised against it, mainly because there was a risk his body might reject the foreign tissue.
CORRECTION: An earlier version said that Joseph "John" Merrick, better known as the "Elephant Man," was said to have suffered from Neurofibromatosis type I (NF-1), but researchers now believe Merrick had a condition known as "Proteus Syndrome."
http://www.huffingtonpost.com/2012/06/19/chandra-wisnu-the-bubble-_n_1609254.html