He accepts his illness and living with constant pain with resignation. Both he, her sister, and her cousin were born with it and, over the years, have learned to live with their skin on fire. Viriato de los Ángeles, 39 years old and resident of Terrassa, suffers from butterfly skin, a rare, genetic and incurable disease, which affects more than 500 people in Spain (about 60 in Catalonia), and which causes extreme fragility of the skin. Known scientifically as epidermolysis bullosa, it is characterized by the formation of wounds and blisters, produced by the slightest friction, as it lacks some of the proteins that act as a “glue” of the skin and is resistant to blows or simple friction.
Those who suffer from it are forced to bandage their bodies almost daily, in painful treatments that can last between one and four hours. On many occasions, as in the case of Viriato, “the skin takes 3 to 5 days to regenerate, which leaves me quite immobilized, stretched out in bed, without leaving the house,” he details. How has this disease affected your life? He recognizes that apart from the physical pain, emotional damage also takes its toll. “There are days when you don’t have the desire or energy to do anything.” “But I try to be well – she says – and be a happy and grateful person, with what I have had to live with.”
Viriato – although he defines himself as a free soul – lives with his parents, gypsies of Portuguese origin, due to his dependence on cures. His family was part of a gypsy settlement, with a population of 800 people, who lived in unhealthy barracks between the 80s and 90s of the last century, near the bed of the Sec river, between Cerdanyola del Vallès and Ripollet.
The Generalitat, before the celebration of the Barcelona Olympic Games, evicted and cleaned the area so as not to give a bad image to the international press. In exchange, he relocated these families to rented, officially protected apartments, mainly in Sabadell, Terrassa and Rubí.
His mother, María Augusta Teixeira, remembers “how difficult it was to care for and cure Viriato and his sister, both with butterfly skin, in those years. We barely had anything to eat, imagine how we were going to have medicines, bandages, water and a proper space. That was not life. It was very, very hard!,” she exclaims.
“I was about 7 years old and I was always in the open fields, playing with stones, in the river. I wanted to be like the other children, but, of course, when I fell or was pushed, I had a terrible time, but I didn’t complain,” she says fiercely. It so happens that the photojournalist who signs the photo of him, Cristóbal Castro, already photographed him, then, in the settlement. And he has searched for it in recent years, until finding it again in Terrassa.
Viriato doesn’t ask much from life. Although he does want to make a request to the public administration, after they have denied his right on separate occasions. “I have a recognized 65% physical disability. When I walk a lot, even if I wear comfortable shoes, I get blisters on the soles of my feet and it is difficult for me to move forward. I arrived with destroyed feet. It hurts like hell,” he laments.
“Two years ago I went to the Serveis de Valoració i Orientació a Persones amb Discapacitat office, the CAD of Terrassa – of the Generalitat – and I submitted an application with all the documentation to request a parking space in front of my house. I can drive without a problem, but I still don’t understand why they denied me. Half a year later, I returned and just by entering my ID he insisted that it did not apply to me. Exhausted, I gave up,” he laments now.
Her sister, who lives in Zaragoza, is a member of Debra Piel de Mariposa, the only Spanish association that cares for families with this disease. Viriato has promised to sign up because he needs a group of equals. From the entity they demand “greater investment in research and health so that families can have a prenatal diagnosis, early care and that health centers offer, in all communities, home support.”