Wibowo, a 16-year-old Indonesian boy sheds his skin like a snake every
41 days and must constantly smear his body with moisturiser to stop it
hardening and seizing up.
The teenager has a rare skin condition that doctors in Indonesia have
been unable or unwilling to treat and which has left him with an
extraordinary appearance. He suffers from Erythroderma, an inflammatory
skin disease also known as ‘red man syndrome’, that causes the skin
over almost the entire body to become scaly and flake off.
Ari must soak his body in water every hour – night and day – and smear
himself with lotion every three hours to prevent drying out.
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 moisturise 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”. Mr Lubis
said Ari’s family were told by doctors at the hospital where he was
born that it did not have the resources to treat the condition, and
asked them to take the infant away.
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 to
everyone else,” Mr Lubis said. Ari 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
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