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Djalma Jardin |
His village, Araras in the state of Sao Paolo resembles a ghost town because most residents suffer from Xeroderma Pigmentosum (XP), which means their skin is unable to repair damage caused by ultraviolet light.
Of the 800 people in the village, 600 are affected by XP. Of those, 20 have full-blown symptoms and are susceptible to an aggressive form of skin cancer.
Mr Jardin's face was ravaged by the disease, leaving him with just one eye. He slept with a plaster
over it because damage to his eyelid meant he couldn't close it.
Following the interview, Mr Jardin's condition worsened and the illness sadly cost him his life.
'If I go out I feel the sun burning me,' he said. 'I go to bed and wake up the next day with a small spot, and then in a couple of days it's growing quickly, like the one I got in my eye which never stopped growing. It's an awful disease, terrible.'
His family has already lost another relative to the disorder and another of Mr Jardin's brothers and his sister Claudia are also affected by it.
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Deide with Gleice |
Dairy farmer Deide has also lost much of his face to the incurable condition. He said:
'I had surgery to remove the palate and the right jawbone. Without the prosthesis I couldn't talk.'Store owner Gleice Machado was keen to find out what was causing the epidemic, after seeing so many of those affected coming through her doors.
'I had no idea what it was and why they were disfigured,' she said. 'Some believed it was a sexually transmitted disease. Others said they believed this was a punishment from God.'She raised awareness of the condition through the local press and the story was picked up by the national media.
He said:
'We went to the area and tried to identify genetic mutations affecting the patients.After running tests on all of the villagers, Dr Menck and his team discovered 600 of the 800 villagers were carrying a recessive XP gene. It could be traced back to the families of three Portuguese settlers.
'Until not long ago, people believed it was a contagious disease, but it's an inherited disease.'
Dermatologist Sulamita Chaibub said:
'In Araras there is a concentration of people with the faulty gene who keep marrying each other, so the gene becomes dominant and the disease appears.'There is no cure for XP but doctors have now warned villagers to stay out of the sun completely - and it is hoped this advice will save many lives.
Dr Menck said:
'It is not possible to cure them immediately. But I hope perhaps in the future, maybe in 20 or 30 years time.'
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Residents who suffer XP talk during a meeting in the village. Their umbrellas, which protect them from the sun, surround them |
DailyMailUK
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