Monday, February 2, 2015

Tree-Man Syndrome

This is Dede Koswara, and, sadly, this photograph is entirely real.  It is not some set of make-up effects from a Stan Winston School dropout.  It's the result of an extremely rare genetic disorder known as Epidermodysplasia verruciformis, a.k.a. Tree-Man Syndrome.

Individuals with this disorder are extremely susceptible to Human Papillomaviruses (HPV) on the skin.  Once HPV infects the person, their bodies are incapable of fending off the virus, and it multiplies out of control.  This produces layers of scaly macules (changes in color), and papules (fluidless bumps), usually concentrated around the hands, feet, face, and genitals.  More benign cases only suffer from flat, wart-like lesions over the body.  More malignant cases, like that of Dede Koswara, produce carcinomas and polymorphic legions.

In essence, individuals with this disorder cut or scrape themselves (usually during adolescence), breaking the skin.  At that point, they are infected by HPV, and soon their skin begins to grow into hard, scaly, rootlike structures.  It overwhelms their fingers and features, making it difficult or impossible to eat and continue everyday life.

Treatments include surgeries to remove the growths, but this is a temporary coping mechanism rather than a cure.  Various drugs and supplements are currently being tested with mixed results.

Photographs of Dede Koswara first appeared on the internet in late 2007.  As one of the most severe cases of Tree-Man Syndrome to date, he was quickly picked up by a number of American tv shows on the Discovery Channel, TLC, and ABC.  They chronicled the story of how his life fell apart once his growths became overwhelming.

When he was 10 years old, Dede was playing in the forest near his home in Java and cut his knee.  Soon warts began appearing around the cut.  They spread.  It took years, but the growths eventually crept over Koswara's body.  Though they didn't hurt or itch, they smelled terrible.  He got married and had two children.  But by the time he was 28, the growths had completely covered his hands, rendering them totally useless.  He was no longer able to do his job as a construction worker.  His wife left him.  Without the ability to work, Koswara joined a travelling freakshow to support his kids.
It was during this time that pictures of him surfaced, attracting the attention of documentary-makers.
During 2008, Dede received experimental surgery to remove some of the growths from his extremities.  It was successful, and allowed him the use of his hands for the first time in 10 years (he was 34 at the time).  At the same time, doctors gave him chemotherapy to bring the HPV under control.  Unfortunately, the treatment was cut short when his liver began to fail.

In a turn of international drama, before the treatment could be completed by an American dermatologist named Gaspari, the Javanese government became involved.  They kicked Gaspari out of Java on suspicion of taking blood and tissue samples abroad for commercial purposes.

Since the treatment, Koswara's warts have begun to grow back.  He's had to return to his parents house where they clean him and feed him; dress him in his specially zippered shirts.

I'll leave you with a quote from Koswara himself:

"They say I'm not human.  Whatever they want to say, that's fine.  I guess I am a Tree-Man...  My body has again betrayed me, but what can I do?"


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