‘Bubble Skin Man’ Seeks Cure, To Be Featured in TLC
Bubble Skin Man Chandra Wisnu will speak in a documentary which will debut on June 20, 2012 on TLC in a bid to find a cure for the disease.
Chandra Wisnu, 57 from Indonesia, suffers from a rare disease that has left him covered in tumours resembling pink bubble wrap.
To avoid ridicule from his neighbors, Wisnu locked inside his house so no one could see him and his pink tumors. He goes out on a rare occasion but he wears three jackets, a balaclava and sunglasses so he doesn’t frighten children.
“People are afraid, they are frightened of my horrible face and worried they might catch the disease. So instead I avoid people, I rarely go out except to pick up my daughter from school. And when I do I cover my head and my face because I don’t want my daughter’s friends to bully her for having ‘the dad with the horrible face,” he said.
The lumps first appeared when he was 19, spread to his back by age 24 and covered his entire body by the time he was 32.
Wisnu said that his parents used to bring him to different dermatologists during the early stages of the disease on the hope of finding a cure. However, after the prescribed topical creams were proven ineffective, he has resigned and decided to live with it. Some doctors told him the condition was genetic and possibly caused by an abnormality in the nervous system.
“There was no special treatment for my disease. I was just told to see one dermatologist after another because they did not know how to treat me,” he said.
Mr. Wisnu has began worrying about the condition of his two children, his eldest son Martin, 32 and daughter Lis, 26, who both have began to develop symptoms.
“They only have some small tumors now but they worry they will get worse. If there is a chance to get such kind of free medication, I will take that chance, but right now my family is all the treatment I need,” he said.
Helping people such as Chandra who suffer from rare diseases can improve not only their health but overall well being. An online healthcare management degree may be one way for someone to have their role in helping these people.