My name is Kristián Hulala and I am from Slovakia, I am 39 years old and since birth I have been living with a rare and difficult disease Epidermolysis Bullosa (better known as “butterfly wings”). It is a very rare and painful skin disease that causes me extensive open wounds and blisters all over my body. I myself have the most severe form — dystrophic. My fingers and toes are significantly deformed and fused, and due to a damaged esophagus and throat I have to eat only mixed food. I require 24-hour care from my mother. Due to my health condition, I have been on disability pension since I was 18. I spend most of my day mainly at the computer, which is my window to the world. I am interested in technological news, I read interesting things, play games, watch educational videos and, most importantly, I maintain contact with the world around me and my friends. I also have my own website: www.kristianhulala.sk, where I write about my life and illness.