Thursday, July 30, 2009

Extra Ordinary People - Half Man Half Tree (HDTV)

Season 6, Episode 15
In a remote village in Indonesia, 36-year-old fisherman Dede struggles to live an ordinary life. He has baffled doctors with an affliction so terrible that he can no longer work or venture out in public. Dede has root-like structures growing out of his limbs – branches that can grow up to five centimetres a year, and welts that cover his body.

The mystery illness has robbed Dede of his independence and he lives in the fear that the welts, which first appeared when he was 15, may eventually cover his eyes and mouth, leaving him unable to eat or breathe. Dede's wife left him because of the disease, and his two teenage children are now being cared for by his sister. "I want to be able to provide for them," he says. "I hope I live long enough to see my grandchildren." But a far more troubling question concerns Dede – has he passed on his ailment to his children?

Dede's case has come to the attention of Dr A Gaspari, a dermatologist at the University of Maryland. He makes the long journey by plane, boat and foot to Dede's village in the hope of diagnosing his illness. Upon meeting the patient, Dr Gaspari cannot hide his shock. "I'm absolutely stunned," he says. "I’ve never seen anything like this before."

A physical exam leads Dr Gaspari to suspect that Dede's condition is wart-like in nature. The warts have grown and spread, creating cutaneous horns on Dede's hands and feet, and Dr Gaspari is concerned that they could become cancerous. "It is life threatening for the patient. It is absolutely real and requires attention," he says.

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To establish the exact nature of the underlying infection, Dr Gaspari removes four warts and takes blood samples. The procedures are carried out with a basic medical kit on the floor of Dede's hut, and Dr Gaspari has to be careful to control the bleeding from the warts, which have their own internal blood supply.

With his samples gathered, Dr Gaspari flies back to the States to begin testing, while Dede returns to the only job he can keep. He is a member of a travelling circus clan, alongside other victims of terrible skin diseases and deformities. The clan's manager forces them to perform demeaning and potentially dangerous acts in front of large crowds. In the face of their adversity, the clan members have formed friendships based on their mutual status as 'freaks' and outsiders.

After two months of testing, Dr Gaspari concludes that Dede's condition is due to an immunodeficiency. Dede's immune system is unable to cope with the warts, which have grown out of control. "What's unique about Dede is probably the extent and severity of the infection rather than the infection itself," he says. The test results indicate that the growths are not cancerous and that Dede's children are unlikely to inherit the disease, and Dr Gaspari has drawn up a list of drugs that could tackle the warts. Is the end finally in sight for Dede's suffering?

As Dr Gaspari opts to treat Dede with a medical solution, doctors in Romania are attempting to treat a man with a similar affliction. A farmer by the name of Ion has wart-like growths on his hands and feet that have prevented him from working. But in Ion's case, doctors have decided to embark on an experimental five-hour surgery to peel off the growths on one of his hands. Will this risky operation succeed?

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UPDATES: 2009
Dr Gaspari, of the University of Maryland, concluded Dede's affliction was caused by the Human Papilloma Virus (HPV), a fairly common infection usually causing only small warts.

Dede's problem was that he has an extremely rare immune system deficiency, leaving his body 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 causing tree-like growths known as "cutaneous horns".

After clearing up a dispute about authorization with the Indonesian government, Dr Gaspari returned to Indonesia and is now liaising with the doctors caring for Dede at the Hasan Sadikin Hospital in Bandung, West Java. Dede went under the knife for his first operation in January. In the most recent operation, in March, doctors removed growths on his feet. The medics are now trying to ensure that the warts don't grow back.

Dede is taking vitamin A tablets to boost his immune system, and Dr Gaspari is hoping to get expensive anti-viral medicine available only in the US.

His father Ateng, 72, said: "You can see the form of his 10 toes now. He can wear flip flops. He loves doing sudokus. He is in good condition." Ateng added: "The first priority is to get cured and get a job, but as a father, of course I want my son to remarry. He is a normal guy and he is still a young man."

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