In a place where outdoor work is necessary for survival, these people suffer from a rare disease that “melts” their skin when exposed to the sun.
Araras, Brazil, is a village home to a large number of people suffering from a rare genetic disorder known as xeroderma pigmentosum, or XP.
Hundreds of residents are forced to stay indoors most of the day in a place where outdoor work is necessary for survival.
XP is a rare hereditary condition in which the enzyme system lacks the ability to repair DNA after damage from ultraviolet rays. This causes the skin to become extremely sensitive to sunlight and vulnerable to skin cancer.
“I was always exposed to the sun — working, planting and harvesting rice and caring for the cows,” local resident Djalma Antonio Jardim, told the Associated Press. “As the years passed my condition got worse.”
Around 800 people live in the small community, where more than 20 individuals have XP. The numbers are far higher when compared to the United States and Europe where it is estimated to affect only one in every 1 million people.
According to National Institutes of Health: “About 30 percent of people with xeroderma pigmentosum develop progressive neurological abnormalities in addition to problems involving the skin and eyes. These abnormalities can include hearing loss, poor coordination, difficulty in walking, movement problems, loss of intellectual function, difficulty in swallowing and talking, and even seizures. When these neurological problems occur, they tend to worsen with time.”
It is believed Araras was founded by a few families with several carriers of the disease. After several decades of intermarriages, the defect became common in the village, in a genetic phenomenon known as the founder effect.
Gleice Francisca Machado, a village teacher whose 11-year-old son has XP, has started an association to help spread awareness about the disease.
“The sun is our biggest enemy and those affected must change day for night in order live longer,” Machado said. “Unfortunately, that is not possible.”
For more information on XP in Araras, watch the video below:
Originally published at www.carbonated.tv.