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. 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 took samples of Dede’s growths and has now been able to diagnose his condition. He believes Dede has an extremely rare genetic disorder which means his immune system does not function properly. This is why his body was never able to recover from the initial outbreak of the growths, which are actually warts, caused by the human papilloma virus (HPV). Dr Gaspari is now working on developing a unique cure for him.
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.watch the video