US resident Fatima Perez told how she lives with a rare disease, because of which she cannot tolerate sunlight. Her story was shared by the Daily Mail. Perez was born in the Dominican Republic. The girl's skin was always covered with burns; by the age of 20, she almost completely lost her eyesight and hair. She was diagnosed with pigmented xeroderma - a disease in which skin cells cannot recover after exposure to ultraviolet radiation. Her brother died of this disease at the age of nine.
“The doctors told my parents my diagnosis. But they didn’t say that the sun can kill me,”Perce said. At 23, she moved to the United States, where she could receive better medical care. Now 54-year-old Perez lives in a house with tinted windows and drawn curtains. Even so, she has to reapply sunscreen every two hours.
She very rarely goes outside and does so only in a special suit that weighs about two kilograms. “I put on a knee-length poncho, made from two layers of the tightest jeans. The hood covers my face almost completely, I also wear sunglasses with fabric around them, a sunscreen hat with a very long peak and gloves,”she describes her outfit. She has to wear such a suit in any weather.
Xeroderma is a precancerous condition, and Perez admits that she has had cancer-affected skin removed about a hundred times. “The tumors were excised from just one of my legs nine times,” she added. She also avoids halogen lamps and carries a light meter with her at all times to measure light levels. She founded the XP Grupo Luz de Ezperanza charitable foundation for xeroderma sufferers. The disease is extremely rare - in one in 250 thousand people.