In the small Brazilian village of Araras, the sun beams down on largely deserted roads. The sunshine typically sought out year round by thousands of beachgoers is extremely harmful to many of the people in the village who suffer from a rare skin disease.
Xeroderma Pigmentosum (XP) is a genetic disorder that makes the skin unable to repair damage. It's an "inherited condition characterized by an extreme sensitivity to ultraviolet (UV) rays from sunlight,” according to the National Institutes of Health’s Genetic Home Reference online. According to the Daily Mail, about 600 out of 800 people in Araras are affected by it.
As reported by weather.com, since Araras is a tropical farming community and outdoor work is crucial for survival, the condition makes life especially difficult for those affected.
Djalma Antonio Jardim says he was only 9 years old when a large number of freckles and small lumps began to appear on his face, which experts say is a sure sign of XP being present in children. As his disease developed over the course of his adulthood, he was forced to sleep with plaster over his face because damage to his eyelid from the sun left him unable to close his remaining eye.
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"If I go out I feel the sun burning me," said Jardim. "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.”
The Daily Mail reports Jardim lost his life due to the effects of his disease. Many others with the same condition, including relatives of Jardim, continue to suffer. Of the 600 people in Araras affected, 20 of them have full-blown symptoms and are vulnerable to a particularly aggressive form of skin cancer. As a result, the small village looks like a ghost town as people remain indoors in order to avoid the sun.
For years, nobody could tell the villagers what was affecting them. Store owner Gleice Machado, whose son is affected by XP, was curious to find out what it was when she noticed many of her patrons were sick.
"I had no idea what it was and why they were disfigured," said Machado. "Some believed it was a sexually transmitted disease. Others said they believed this was a punishment from God."
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She raised awareness of the condition through local press and the story was later picked up by national media. She studied the history of the area and discovered cases of the disease dating back 100 years. With her findings she started an association that educates the villagers about XP and what precautions they need to take.
Dr. Carlos Menck, a Sao Paolo-based genetics biologist, recognized the condition and ran tests to find out why it was so common in Araras. In addition to discovering the large number of people affected, he also found that the recessive XP gene could be traced back to the families of three Portuguese settlers.
“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,” said dermatologist Sulamita Chaibub.
“It is not possible to cure them immediately. But I hope perhaps in the future, maybe in 20 or 30 years time,” said Menck.
For now, doctors have warned villagers to avoid the sun completely.
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