Chandra Wisnu, 57, suffers from a rare disease that has left him covered in tumours resembling pink bubble wrap.Neurofibromatosis is often described as a "skin disease," but the underlying pathology is systemic, and the health consequences potentially much more devastating that just cosmetic disfigurement.
The father of four - known as "The Bubble Man" in his home village in Indonesia - rarely leaves his house. When he does, 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," he said. "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'."
This man's story is the kind to read on days when you feel your own life is so miserable.
My mom and I shared a cab with a woman with this illness when I was a child--I appreciate you posting this, as I never remembered what it was called. (Because I was, like, 5.) She was middle-aged, very thin, and covered in warty things like this guy, but not as abundant or massed together. I remember being very afraid of her, but tried to be polite anyway. The lady could tell, and told me that there was nothing to be afraid of, that she had an illness that I couldn't catch. She went on to tell my mom that she spent most of her free time volunteering to read to children in hospitals. I think it was really brave of her to do that, and it also probably taught a lot of kids at an early age to be more accepting of people who were different than them.
ReplyDeleteMy mother and I have Neurofibromatosis, although not this severe. My mom has a few of the tumors on the surface of her skin and several underneath the skin. She also has a mass of the tumors in her gut.
ReplyDeleteI don't have any of those tumors, yet. I do have the symptoms--cafe au lait bithmarks and freckling in the armpits.
Hello Tell your mother that I said hello and that i have these things to and I have a lot of them
DeleteI am 19 years old i have also nf
ReplyDeleteauu but have courage dear..
Deletehow amazing is she! Wonderful hero! I cannot believe this happens in genes but it does, she is a beautiful woman and there's nothing scary about her at all, neurofibromatosis happens and i cannot believe she has survived so long with these tumors and I hope she gets lots and lots of hugs from everyone that meets her and hears her story!
ReplyDeleteI have this also and i wish that i can go places and talk to the people who look down on me and how i see that im not the only on with this.....
ReplyDeleteHoney do not worry about what people think live your life, you only have one. Many people do not understand differences but I'm one of the rare people who understands fully. Don't worry... :) You still have the power to change the world!
DeleteThe picture of this disease makes me so sad; I pray to God there will be a cure for all diseases one day so people don't have to suffer physically and/or verbally.
ReplyDeleteThis comment has been removed by a blog administrator.
ReplyDeleteI was around 15 years old, when I first seen someone with this disorder.
ReplyDeleteIt was an older lady on The Maury show. She appeared rather jolly, had a great spirit and had some to terms with her condition.
However, it's sad that some people have to deal with such pain.