A 16-year-old Indonesian boy-Ari Wibowo- has been diagnosed with a rare skin condition they all call it the “snake skin”. The boy sheds his skin every 41 days and must constantly smear his body with moisturizer to stop hardening and seizing up.
The doctors in Indonesia have been unable or unwilling to treat the rare condition. This has left the Indonesian boy with an extraordinary appearance. The boy suffers from Erythroderma, an inflammatory skin disease also known as ‘red man syndrome’, which causes the skin over almost the entire body to become scaly and flake off.
Photographer Nurcholis Anhari Lubis, 35, has documented the little boy’s condition as part of an essay project and describes the boy’s skin condition as “scaly like a snake about to shed his skin”.
“It’s really sad because he was not born normally and has scaly skin all over his body, similar to being severely burnt, from the sole of his feet up to his head. If the boy doesn’t moisturize or soak his skin in water, his body would shrivel and harden up like a sculpture and he won’t be able to move,” Mr Lubis told Daily Mail Australia.
“If he leaves it unattended for too long, he won’t be able to speak because the wrinkles inside his mouth would go hard and it would dry out all his blood in his body”.
The family of the Indonesian boy was advised by doctors to take the boy’s life away while he was an infant because they did not have the resources to treat the skin condition. He and his family now live by a routine of constant washing and dressing his skin with creams. Still, the boy is trying to live a normal life in his village.
“He eats normal food like everyone else and his favourite snacks are instant noodles and crackers. He had trouble making friends when he was younger and would often go and play with the other kids but most of the time, they would avoid him because he is different from everyone else,” Mr Lubis said.
The Indonesian boy is taking lessons, but is forced to study alone because of ignorance about his condition in the community. Mr Lubis said many people blame Ari’s condition on a superstition that if a woman mistreats animals while she is pregnant then it will affect her unborn child. Some people believe Ari’s mother “tortured a lizard” she found in the family home when she was pregnant with Ari.
Ari has trouble talking because of the condition and the vision in his right eye is impaired, while the left must be kept moist with constant drops. His condition is very sad…
-Photo Courtesy: DailyMail