Zoe’s Story
When my daughter Zoe was 13 days old I fainted after seeing a blister on her ankle. I knew what EB was and I knew right away what the blister meant. My husband David has the most severe type of EB Simplex. When David was a child he was [...]
Kylan’s Story
Emily, tells us about her son, Kylan. When Kylan was born we could see straight away that something was wrong. He had missing skin on his forehead, nose and ears and his right foot was fully degloved. He also had blisters in his mouth and he had floating fingernails. [...]
Nurbanu’s Story
My story with EB started 22 years ago, on 5 September 1996. It’s been a long journey since then. Like every little human being I had ups and downs. But never actually let myself break down, which I guess was what made me different to others. Life does not [...]
Fletcher’s Story
My name’s Fletcher and I’m 11 years old. I have EB Simplex, that’s the type of EB that mostly affects me on my feet and hands, but actually I can get it anywhere on my body. I usually get blisters on my feet when I’ve been running around, especially [...]