Meet some of our members who share their experience of what life is like living with EB.
Contact us via [email protected] if you would like to share your own story.
My name is Fazeel and I have EB – a condition which makes my skin blister and tear really easily. When I’m older I’m going to be a doctor and cure EB. Read more
Every week thousands of kids walk to school; for Ayaan, this short journey is impossible. Read more
When you're expecting your first child, people always say your life will change forever. Beata didn't realise how true this was until her son, James, was born. The skin was missing from both of James' legs. Read more
Gabrielius is just like other kids. He's energetic and smiley and he loves to play football. But his skin is as delicate as a butterfly's wing. Read more
I am a freelance model and an advocate for EB. I spend my time using my modelling and social media platform to spread awareness and educate people on EB. Read more
Freddie’s mum and dad struggled with his diagnosis and worried about how they would cope financially. But they feel confident knowing they can call DEBRA whenever they need support. Read more
We’re a normal family. Our children, Isla (10) and Emily (13), go to school, have their friends round and like to play on the trampoline whenever they get the chance. But when one of your children has EB, you have to redefine normal. Read more
EB has definitely been an emotional as well as a physical challenge for me. Things can seem very dark at times, and believe me when I say I know, but being able to talk about it can make all the difference in the world. Read more
Everyday activities, like standing, walking and even holding a pen, can give Heather agonising blisters. Sometimes the pain is so bad she crawls on the floor to take the pressure off her feet. Read more
Tom's words on how it is living with Epidermolysis Bullosa Simplex. Read more
Living with Dystrophic EB is an unimaginable roller coaster for Leslie Paine. Read more
Karen and Simon Talbot talk about losing their son Dylan to Junctional EB aged 3 months and 1 day. Read more