Last night I was flipping through the channels and stopped on “My Shocking Story“, a show on TLC. This episode was entitled “Half Man, Half Tree”, and detailed the strange, tragic case of an Indonesian man named Dede Koswara. I think when they first showed Dede on-screen, I may have literally yelled “Oh my God!”.I think you can see why:
Apparently, Dede cut his knee when he was 15, at which point he started developing warts, which spread rapidly, leading to the extreme barklike growths you see here . Living in a poor village in Indonesia, Dede was unable to receive treatment and as such the warts continued their growth unabated, resulting in the condition seen above. Frustrated with his inability to work due to the disease, his wife of ten years left him, leaving him to support his two children by performing in a traveling freakshow.
An American dermatologist from the University of Maryland named Anthony Gaspari visited Dede in conjuction with this program, and after performing a biopsy and testing the results back at the university concluded that Dede suffers from a rare condition called epidermodysplasia verruciformis. The disease, caused by HPV, leads to the growth of macules and papules on the skin, especially on the hands and feet.
What made Dede’s condition literally one-of-a-kind is the fact that he also suffers from an immune deficiency virus (Dr. Gaspari initially thought that Dede may have had AIDS, a hypothesis that was eventually disproven), that allows for the rampant spreading of warts that had overtaken his extremities. At the end of the program, Dr. Gaspari seemed hopeful that with regular doses of Vitamin A to help boost his immune system, the extent of Dede’s growths could be lessened to the extent that removal would be a viable option. However, for some reason it seemed that Dede was reluctant to proceed with treatments and surgery, and continued to perform in the freakshow to support his family.
I was fascinated and saddened by Dede’s story, and tried to find out what had happened to him after the show was filmed. Happily, it looks as though he decided to take up treatment, and after several surgeries and regular treatment, he has regained the use of his hands and feet. Though Dede will have to recieve treatment for the rest of his life and will never have a normal body, he can now feed himself and support his family, and no longer has to perform in the freakshow.
I certainly hope that this post doesn’t come off as exploitative or demeaning in any way. Having suffered from a rare skin condition myself (dermatomyositis), I greatly sympathize with the plight of people like Dede. I’m certainly not trying to compare what I had to what Dede has suffered….any problems or difficulties I may have had are infintismal in relation. I was lucky to have had an expert living nearby who could diagnose and treat me; I was lucky to have parents who paid for incredibly expensive medical treatments; I was lucky to live in a place where such treatments were even an option and I was lucky, throughout the duration, to be able to feed, dress and generally take care of myself. Dede has not been so lucky. I think what really affects me is that if I were in Dede’s enviroment, with his resources, I could have been disfigured for life, crippled or very likely dead. An abnormal medical condition is a very traumatic thing to deal with, something I’ve only been able to admit to myself gradually over time. I commend Dr. Gaspari for helping Dede out, and especially Dede himself, for battling through this condition and for not giving up.