READ EXCERPT: 'Medical Mysteries,' by Ann Reynolds and Kenneth Wapner

Dede's Case

Dede, clearly, didn't get those early treatments, and with his unique immune system problem, they may not have worked. "I've never seen a case that extreme," Jaliman says of Dede. "If he was treated early and he was treated aggressively, I think he might have had a better outcome. But, you know, it's always so unfair to say because we aren't there, and we didn't treat him."

Jaliman agrees with medical experts who have written about Dede -- it's clear there was something wrong with his immune system.

"When I think back to the early days of AIDS," she says, "the patients I saw before we had medication for AIDS, their warts looked like that. They were warts that just grew totally out of control. And it was so difficult to treat because the body has some defense against the wart virus. When you see no defense and the virus growing totally out of control, it takes over the skin. The skin looks almost totally unrecognizable. That's when you know there is something wrong with the immune system."

In Indonesia, Dede is now under the care of a team of local doctors at Hasan Sadikin Hospital. Dr. Hardisiswo Soedjana, who is known as Dr. Hardi, is the lead doctor in Dede's case.

"When Dede came here, I saw almost all of the body of Dede had warts," says Hardi. "As long as the virus is still in his body, there can be growths."

Gaspari, with his specialty in immune function of the skin, has been in contact with the Indonesian doctors and has visited Indonesia twice to help treat Dede.

"We've learned that Dede has a defect in his immune system that doesn't allow him to control this viral infection," says Gaspari. "One of our approaches will be to help restore his immune system. Secondly, we will be attacking the virus to cause the regression of these tumorous growths on his skin. We are trying to obtain some of the pharmaceutical agents that we need to give this treatment, and to deal with some of the complications that we've noted. We're planning further studies to understand the disease. So everything that he needs will be provided to him here in Indonesia. It would be very disruptive for him to travel to the United States. He's much more comfortable here close to his home and his family."

A team of doctors at Hasan Sadikin Hospital has performed eight surgeries over nine months. While Dede was under anesthesia, doctors had to improvise a bit: they'd never done surgery like this before.

"We estimated that the time of one surgery would be just two hours, but it was prolonged to four hours," says Hardi. Doctors ended up using a small electric saw to cut off the longest wart growths -- dead skin tissue hardened by the years. In just one surgery, they filled surgical pans with pounds of what had looked like Dede's "roots" from his hands and feet.

"The stuff that you see in the bowl that the doctors cut off from Dede, that's actually the wart virus," Jaliman said when we showed her a still photo taken from the hospital videotape re-cording of the operation. "That is a pile of contagious viral skin. I think it's such a tragic thing for somebody to have to live with something like this," she adds.

"Imagine when people look at him and they see that, they have no idea what it is. It's terrible for him because it is, in fact, contagious. So imagine what his life must be like. People don't want to go near him."

Page
Join the Discussion
blog comments powered by Disqus
 
You Might Also Like...