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With his rootlike feet and gnarled hands, he is known as "The Tree Man".
Known simply as Dede, living in a remote village in the wilderness of Indonesia, 36-year-old father-of-two Dede has stunned medical experts.
Most of his body is covered in growths which have become so large and thick they look like twisted tree roots growing out of his skin.
Dede says his worst fear is that the cruel disorder will kill him before doctors have a chance to save him. "I am scared that it will grow across my face and end up covering it all up," the former construction worker says. "I'm so afraid I won't be able to see, that I won't be able to eat."
Dede grew up in a tiny hamlet near Bandung, south of Jakarta, the capital of the volcanic island of Java. He enjoyed a completely normal childhood, but just after he turned 15 he cut his knee in an accident on a building site. The injury - not deemed to be at all serious at the time - was to change his life forever. Within weeks, a huge growth had emerged from inside his wound. He says at first he was not unduly worried, believing it was a wart which would eventually drop off. But it didn't. And shortly afterwards, horrific welts started to spring up all over his body.
"The first one was cut off in an operation, but that didn't stop it. Instead it just grew back faster. "Then it started on my foot, then my arms, then my other foot and then on my head," says Dede.
By the time he had reached his early 20s, he could no longer hold a tool and struggled to complete basic tasks. He was fired and has remained unemployed since. His wife also left him, leaving him to raise their two children, Entis, now 18, and Entang, 16, on his own. "I feel sad because my wife left me," says Dede. "And with my condition I cannot look after my kids. I miss working very much. But unfortunately I just can't do it."
Unable to work or earn a regular wage like his friends, Dede has been crippled financially ever since the shocking condition first took over his body. To make ends meet he even joined a local "freak show", parading in front of a paying audience alongside victims of other peculiar diseases. And as a single father, he knows he is not only responsible for himself.
But just washing and getting dressed in the morning have become virtually impossible for Dede. He has been helped by his brother-in-law Imun, his parents and his close friends, who club together to make sure Dede has enough money to feed himself and his teenage kids each month. But his support network of friends and family have provided him with more than just money to survive.
Each morning, family members take turns to put his specially designed trousers on over his sprawling feet and help him lift a fresh shirt over his body. Someone must be around if needs to go to the toilet. Friends have even designed a huge stool so he can reach his food - but even this has to be spoon-fed to him twice a day. Only smoking - he gets through 30 a day - can be enjoyed on his own, with a special cigarette holder.
Indonesian doctors tried to help him when he was younger with a series of painful operations, but to no avail. "When I was in hospital I had some of my growths burnt off and I was injected several times. I was also given some pills. "But everything kept growing back after the operations, like just three weeks later. And they would grow back faster," he says.
Now medical experts in America say they may be able to help Dede by producing a cure specifically for him. Dr Anthony Gaspari, chairman of the Department of Dermatology at the University of Maryland School of Medicine in the US, is fascinated by Dede's condition. "I was absolutely stunned," said Dr Gaspari. "I'd never seen anything like this before. "I've become really interested in his case because it's so absolutely unusual. The growths he has are just something we don't encounter in clinical medicine."
Dr Gaspari, flew out to Dede's home village south of the capital Jakarta claims to have identified his condition, and proposed a treatment that could transform his life.
After testing samples of the lesions and Dede's blood, Dr Anthony Gaspari of the University of Maryland concluded that his affliction is caused by the Human Papilloma Virus (HPV), a fairly common infection that usually causes small warts to develop on sufferers. Dede's problem is that he has a rare genetic fault that impedes his immune system, meaning his body is unable to contain the warts.
The virus was therefore able to "hijack the cellular machinery of his skin cells", ordering them to produce massive amounts of the substance that caused the tree-like growths known as "cutaneous horns" on his hands and feet.
Dede's counts of a key type of white blood cell are so low that Dr Gaspari initially suspected he may have the Aids virus.
But tests showed he did not, and it became clear that Dede's immune condition was something far rarer and more mysterious.
Warts aside, he had enjoyed remarkable good health throughout his life - which would not be expected of someone with a suppressed immune system - and neither his parents nor his siblings have shown signs of developing lesions.
"The likelihood of having his deficiency is less than one in a million," Dr Gaspari told the Telegraph.
Dr Gaspari, who became involved in the case through a Discovery Channel documentary, believes that Dede's condition can be largely cleared up by a daily doses of a synthetic form of Vitamin A, which has been shown to arrest the growth of warts in severe cases of HPV.
"He won't have a perfectly normal body but the warts should reduce in size to the point where he could use his hands," Dr Gaspari said.
"Over the course of three to six months the warts should be come smaller and fewer in number. He will be living a more normal life."
The most resilient warts could then be frozen off and the growths on his hands and feet surgically removed.
Dr Gaspari hopes to get the necessary drugs free of charge from pharmaceutical firms. They would then be administered by Indonesian doctors under his supervision.
Still intrigued by the origins of Dede's peculiar immune condition, the doctor would like to fly him to the United States for further examination, but fears the financial and bureaucratic barriers would prove too difficult to overcome.
"I would like to bring him to the US to run tests on where his immune condition has come from, but I would need funding and to get him a visa as well as someone to cover the costs of the tests," he said.
"I've never seen anything like this in my entire career."
But Dede says: "I worry that this disease will be passed to my children." And despite previous disappointments, Dede is hopeful that this time doctors can help him. "I'd love to be cured," he says poignantly.
However, Indonesia's health minister, Siti Fadilah Supari, lambasted the US doctor currently treating the 35-year-old man, who has the rare affliction caused by the Human Papilloma Virus.
Mrs Supari (Second from right in the above image) is angry that Dr Anthony Gaspari has taken blood and tissue samples out of the country to the United States in a bid to diagnose the illness. She claims such samples could be used in the future to make vaccines that the poor could not afford.
Developing nations such as Indonesia risk exploitation unless they maintain control over their virus strains, Mrs Supari said.
But her comments have now offended Dr Gaspari, an American dermatologist at the University of Maryland, who maintains that, while he took the samples without permission, his sole motivation was getting treatment for the man.
and also stressed his willingness to put in writing that the samples were not for commercial use.
Mrs Supari, who has famously refused to share bird flu samples with international scientists, made her comments on Sunday after returning from a World Health Organisation (WHO) conference in Geneva.
"We are offended because the samples were taken from Dede without our permission," she told reporters at the hospital where the man was being treated.
One can see the video documentary of Dede by going through this link:
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If video streaming is not working then click on the link below:
http://link.brightcove.com/services/...ctid1305059663[/hide]
Known simply as Dede, living in a remote village in the wilderness of Indonesia, 36-year-old father-of-two Dede has stunned medical experts.
Most of his body is covered in growths which have become so large and thick they look like twisted tree roots growing out of his skin.
Dede says his worst fear is that the cruel disorder will kill him before doctors have a chance to save him. "I am scared that it will grow across my face and end up covering it all up," the former construction worker says. "I'm so afraid I won't be able to see, that I won't be able to eat."
Dede grew up in a tiny hamlet near Bandung, south of Jakarta, the capital of the volcanic island of Java. He enjoyed a completely normal childhood, but just after he turned 15 he cut his knee in an accident on a building site. The injury - not deemed to be at all serious at the time - was to change his life forever. Within weeks, a huge growth had emerged from inside his wound. He says at first he was not unduly worried, believing it was a wart which would eventually drop off. But it didn't. And shortly afterwards, horrific welts started to spring up all over his body.
"The first one was cut off in an operation, but that didn't stop it. Instead it just grew back faster. "Then it started on my foot, then my arms, then my other foot and then on my head," says Dede.
By the time he had reached his early 20s, he could no longer hold a tool and struggled to complete basic tasks. He was fired and has remained unemployed since. His wife also left him, leaving him to raise their two children, Entis, now 18, and Entang, 16, on his own. "I feel sad because my wife left me," says Dede. "And with my condition I cannot look after my kids. I miss working very much. But unfortunately I just can't do it."
Unable to work or earn a regular wage like his friends, Dede has been crippled financially ever since the shocking condition first took over his body. To make ends meet he even joined a local "freak show", parading in front of a paying audience alongside victims of other peculiar diseases. And as a single father, he knows he is not only responsible for himself.
But just washing and getting dressed in the morning have become virtually impossible for Dede. He has been helped by his brother-in-law Imun, his parents and his close friends, who club together to make sure Dede has enough money to feed himself and his teenage kids each month. But his support network of friends and family have provided him with more than just money to survive.
Each morning, family members take turns to put his specially designed trousers on over his sprawling feet and help him lift a fresh shirt over his body. Someone must be around if needs to go to the toilet. Friends have even designed a huge stool so he can reach his food - but even this has to be spoon-fed to him twice a day. Only smoking - he gets through 30 a day - can be enjoyed on his own, with a special cigarette holder.
Indonesian doctors tried to help him when he was younger with a series of painful operations, but to no avail. "When I was in hospital I had some of my growths burnt off and I was injected several times. I was also given some pills. "But everything kept growing back after the operations, like just three weeks later. And they would grow back faster," he says.
Now medical experts in America say they may be able to help Dede by producing a cure specifically for him. Dr Anthony Gaspari, chairman of the Department of Dermatology at the University of Maryland School of Medicine in the US, is fascinated by Dede's condition. "I was absolutely stunned," said Dr Gaspari. "I'd never seen anything like this before. "I've become really interested in his case because it's so absolutely unusual. The growths he has are just something we don't encounter in clinical medicine."
Dr Gaspari, flew out to Dede's home village south of the capital Jakarta claims to have identified his condition, and proposed a treatment that could transform his life.
After testing samples of the lesions and Dede's blood, Dr Anthony Gaspari of the University of Maryland concluded that his affliction is caused by the Human Papilloma Virus (HPV), a fairly common infection that usually causes small warts to develop on sufferers. Dede's problem is that he has a rare genetic fault that impedes his immune system, meaning his body is unable to contain the warts.
The virus was therefore able to "hijack the cellular machinery of his skin cells", ordering them to produce massive amounts of the substance that caused the tree-like growths known as "cutaneous horns" on his hands and feet.
Dede's counts of a key type of white blood cell are so low that Dr Gaspari initially suspected he may have the Aids virus.
But tests showed he did not, and it became clear that Dede's immune condition was something far rarer and more mysterious.
Warts aside, he had enjoyed remarkable good health throughout his life - which would not be expected of someone with a suppressed immune system - and neither his parents nor his siblings have shown signs of developing lesions.
"The likelihood of having his deficiency is less than one in a million," Dr Gaspari told the Telegraph.
Dr Gaspari, who became involved in the case through a Discovery Channel documentary, believes that Dede's condition can be largely cleared up by a daily doses of a synthetic form of Vitamin A, which has been shown to arrest the growth of warts in severe cases of HPV.
"He won't have a perfectly normal body but the warts should reduce in size to the point where he could use his hands," Dr Gaspari said.
"Over the course of three to six months the warts should be come smaller and fewer in number. He will be living a more normal life."
The most resilient warts could then be frozen off and the growths on his hands and feet surgically removed.
Dr Gaspari hopes to get the necessary drugs free of charge from pharmaceutical firms. They would then be administered by Indonesian doctors under his supervision.
Still intrigued by the origins of Dede's peculiar immune condition, the doctor would like to fly him to the United States for further examination, but fears the financial and bureaucratic barriers would prove too difficult to overcome.
"I would like to bring him to the US to run tests on where his immune condition has come from, but I would need funding and to get him a visa as well as someone to cover the costs of the tests," he said.
"I've never seen anything like this in my entire career."
But Dede says: "I worry that this disease will be passed to my children." And despite previous disappointments, Dede is hopeful that this time doctors can help him. "I'd love to be cured," he says poignantly.
However, Indonesia's health minister, Siti Fadilah Supari, lambasted the US doctor currently treating the 35-year-old man, who has the rare affliction caused by the Human Papilloma Virus.
Mrs Supari (Second from right in the above image) is angry that Dr Anthony Gaspari has taken blood and tissue samples out of the country to the United States in a bid to diagnose the illness. She claims such samples could be used in the future to make vaccines that the poor could not afford.
Developing nations such as Indonesia risk exploitation unless they maintain control over their virus strains, Mrs Supari said.
But her comments have now offended Dr Gaspari, an American dermatologist at the University of Maryland, who maintains that, while he took the samples without permission, his sole motivation was getting treatment for the man.
Originally posted by Dr Gaspari
Mrs Supari, who has famously refused to share bird flu samples with international scientists, made her comments on Sunday after returning from a World Health Organisation (WHO) conference in Geneva.
"We are offended because the samples were taken from Dede without our permission," she told reporters at the hospital where the man was being treated.
Originally posted by Mrs Supari
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If video streaming is not working then click on the link below:
http://link.brightcove.com/services/...ctid1305059663[/hide]
Most of Human Papilloma Virus (HPV) are sexually transmitted !
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