Mga Balitang Pinas Sa pinas, ang kahawig yata ng sakit na ito ay severe psoriasis, isang rare skin condition. Nakalulunos ang kanyang kalagayan, sanay may makagamot pa sa kanya ano... sad for this boy. There’s a 16-year-old boy from Indonesia who has a heartbreaking rare skin condition called Erythroderma, or ‘red man syndrome’ which has caused him to have an extraordinary appearance and a very difficult existence since birth. Ari Wibowo was dubbed ‘Snake Boy’ because his condition causes his skin to shed every 41 days or so; according to a photographer, Nurcholis Anhari Lubis, 35, who spent four days with him and his family to document his condition and way of life. Lubis disclosed that the boy is ‘scaly like a snake’and that “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,” as told to Daily Mail Australia. The photographer added that if the boy does not moisturize himself or soak his skin in water, his body would shrivel and harden up like a sculpture and he won’t be able to move. He added that if he’s left to dry out, he could turn into a statue-like being. Ari is left with no choice but to constantly soak his body in water every hour and smear himself with lotion to prevent his skin from hardening and leaving him unable to move. In addition, Ari has trouble talking because of his condition. The vision in his right eye is impaired, while the left must be kept moist with constant drops. So far, Indonesian doctors have expressed they do not have the resources to treat the boy’s Erythroderma, Ari is trying to live a normal life in his village in spite of his condition, but it is not easy for him to disregard the treatment he gets from other people. Lubis found out that socializing is difficult as people fear his condition is contagious. Even schools refuse him on the same issue, so he is left to take lessons alone; away from other children. Lubis said, “Ari 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.” Worse is that even Ari’s mother has been attacked by the country’s superstitious beliefs that she has probably tortured lizards when she was pregnant which caused her child to resemble the reptile, Lubis narrated. ‘When I approached Ari for a photo shoot, he looked very shy, but didn’t feel embarrassed and was happy to share his story,’ he said. ‘My interests have been to document lives and the way humans live in their own world, interacting with it and struggling to change it into their own way. ’ https://youtube/watch?v=OWzkhQhW kVc ‘Snake Boy’ sheds his skin every 41 days, has to keep himself moisturized kickerdaily
Posted on: Sat, 27 Sep 2014 05:22:08 +0000
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