Santiago Vargas is 24 years old and is as tall as an 8-year-old child.
He was born with epidermolysis bullosa, known as butterfly skin or crystal skin. His skin tears so easily it’s frightening: even a slight brush can cause wounds and blisters, as if he had been burned or scraped. That’s why every morning, before starting the day, he bandages himself and treats his wounds. Over the years, the fingers on his hands gradually fused together, he now uses a wheelchair, and he has already undergone several surgeries.
It is a genetic disease that is estimated to affect 1 in every 17.000 people, and around 500.000 people worldwide have already been diagnosed with it.
And yet, the first thing he wants to make clear is something else: “It’s not a contagious disease; you can’t catch it, which is what so many people ask me”. He studies music in Bogotá, listens to Carlos Vives, Morat, and Juanes, and dreams of having a wife and children. “We’re normal people; we have a minor condition, which is delicate skin”.