The US resident Fatima Perez (Fatima Perez) described how living with a rare disease, which can not bear the sunlight. Her story shared the edition of the Daily Mail.
Perez was born in the Dominican Republic. Leather boys were always covered with burns to 20 years it has almost completely lost his eyesight and hair. She was diagnosed with retinitis pigmentosum is a disease in which skin cells are unable to recover after exposure to UV light. Her brother died from the disease in nine years.
“The doctors called the parents of my diagnosis. But did not say that the sun can kill me,” said the Persian. At 23, she moved to the USA where she could provide better quality medical care.
Now 54-year-old Perez lives in a house with tinted Windows and drawn curtains. Even with this in mind, she has every two hours to re-apply the cream on the skin against sunburn.
She very rarely goes out and does it only in a special suit, which weighs about two pounds. “I wear a poncho, knee length, sewn from two layers of very tight jeans. The hood covers my face almost completely, I also sunglasses with cloth around them, a hat sunscreen material with extra long visor and gloves,” she describes his robes. She has to wear a suit in any weather.
Pigmentosum — a precancerous condition, and Perez admits that she has about a hundred times removed cancerous pieces of skin. “Only one of my leg tumor cut out nine times,” she added.
Also she’s avoiding halogen lamps and always carries a light meter to measure light level.
She founded the charity organization XP Grupo Luz de Ezperanza for those suffering from pigmentosum. The disease is extremely rare — one of 250 thousand people.
Video, photo All from Russia.