Candra Wisnu, 57 tahun dari Indonesia akhirnya membuat keputusan untuk mendedahkan dirinya demi mencari ubat untuk menyembuhkan penyakitnya setelah dia mendapati anaknya Martin Ananda, 32, dan anak perempuannya Lis Candra, 26 sudah menunjukkan tanda-tanda akan mengidap penyakit yang sama. Dia yang miskin dan kurang berkemampuan berharap para doktor akan dapat mencari penawarnya.
Artikel berbahasa Inggeris:
THIS man's skin has been so badly ravaged by tumours he is known as The Bubble Man.
Chandra Wisnu, 57, is thought to be one of the few people in the world with a rare skin disease which causes large, bubble-like lumps to develop all over his body.
The married dad-of-four, from Indonesia, rarely leaves his house and when he does he is forced to cover his face with a balaclava and wear sunglasses for fear of frightening or being ridiculed by others.
Lesions began to develop on Chandra's face when he was just 19.
By the time he was 24 they had spread to his back and by age 32 they almost completely covered his body.
During the early stages of the disease, Chandra's parents took him to see a number of doctors and dermatologists who were baffled by the severity of his symptoms.
He was told the condition was genetic and may be caused by an abnormality in the nervous system that causes benign tumours to develop on the skin or bone.
Artikel berbahasa Inggeris:
THIS man's skin has been so badly ravaged by tumours he is known as The Bubble Man.
Chandra Wisnu, 57, is thought to be one of the few people in the world with a rare skin disease which causes large, bubble-like lumps to develop all over his body.
The married dad-of-four, from Indonesia, rarely leaves his house and when he does he is forced to cover his face with a balaclava and wear sunglasses for fear of frightening or being ridiculed by others.
Lesions began to develop on Chandra's face when he was just 19.
By the time he was 24 they had spread to his back and by age 32 they almost completely covered his body.
During the early stages of the disease, Chandra's parents took him to see a number of doctors and dermatologists who were baffled by the severity of his symptoms.
He was told the condition was genetic and may be caused by an abnormality in the nervous system that causes benign tumours to develop on the skin or bone.
He was prescribed a number of creams — but they did nothing to stop the lesions from spreading.
Unable to find a cure and no longer able to afford medical treatment, Chandra was forced to live with the bizarre condition.
He said: "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.
"After this my dad did not believe there was any reason to take me to hospital anymore and I haven't seen a doctor again since.
"This disease has a huge impact on my life, the lumps get very itchy and sore in the hot weather.
"To prevent the lumps itching and to stop people staring I wear three jackets and cover my head if I go out.
"People have never mocked or ridiculed me directly, but they do stare at me and avoid me, most people act very strangely around me.
"It makes me feel very insecure and angry when people treat me differently.
"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 Hasunns 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."
Nanik Tri Haryani, Chandra's wife of 33 years, said: "A long time ago when the disease started to change Chandra's appearance he told me to leave and never return.
"But I refused. Seeing him carry on with his life in spite of his changing appearance was, to me, a sign of great strength, not weakness."
Chandra has now decided to unveil his face to the world in a bid to find a cure for the disease after discovering his eldest son Martin Ananda, 32, and daughter Lis Candra, 26, have begun to develop it too.
The brave father cannot afford for his children to see a doctor and fears they too will end up looking like him.
But he doesn't hold out much hope for doctors to find a cure.
He said: "I have never taken my children to see a doctor about the disease because we cannot afford to pay the expensive medical bills.
"They only have some small tumours 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."
Unable to find a cure and no longer able to afford medical treatment, Chandra was forced to live with the bizarre condition.
He said: "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.
"After this my dad did not believe there was any reason to take me to hospital anymore and I haven't seen a doctor again since.
"This disease has a huge impact on my life, the lumps get very itchy and sore in the hot weather.
"To prevent the lumps itching and to stop people staring I wear three jackets and cover my head if I go out.
"People have never mocked or ridiculed me directly, but they do stare at me and avoid me, most people act very strangely around me.
"It makes me feel very insecure and angry when people treat me differently.
"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 Hasunns 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."
Nanik Tri Haryani, Chandra's wife of 33 years, said: "A long time ago when the disease started to change Chandra's appearance he told me to leave and never return.
"But I refused. Seeing him carry on with his life in spite of his changing appearance was, to me, a sign of great strength, not weakness."
Chandra has now decided to unveil his face to the world in a bid to find a cure for the disease after discovering his eldest son Martin Ananda, 32, and daughter Lis Candra, 26, have begun to develop it too.
The brave father cannot afford for his children to see a doctor and fears they too will end up looking like him.
But he doesn't hold out much hope for doctors to find a cure.
He said: "I have never taken my children to see a doctor about the disease because we cannot afford to pay the expensive medical bills.
"They only have some small tumours 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."
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