Isla’s story
“I was born with a severe form of EB. Recessive dystrophic epidermolysis bullosa. It’s an incredibly painful condition that most people have never heard of.
Given the devastating nature of EB, it was immediately apparent to my parents that something was very wrong when I was born. My skin was and is very fragile. The parts you can see and the linings of my mouth, throat, stomach, and my other internal organs.
I deal with the pain and anxiety that comes with EB. I must, I have no other choice.
There is nothing currently to slow or stop my EB. Not for me or the thousands of other children and adults living with it around the world. That must change.
I’m only 17 and yet I’ve already had over 60 operations under general anaesthetic.
Support from DEBRA has really helped me and my family though. From the very beginning of this journey. Specialist advice and care, someone to talk with, some of the answers and much welcomed support, both practical and emotional.
A DEBRA funded EB nurse also helped teach my parents how best to look after my fragile skin. With support and practice, they grew more confident and are now, unfortunately, experts. They spend hours with a team of clinical carers, preparing and applying creams and specialist dressings. These help my delicate skin to heal and protect it from infection and further damage. To cope with this daily treatment though, I do need to take very strong painkillers.
I want a life free of pain more than anything, and I hope one day there will be treatments available to give me that. It’s not just about me though. Too many people are suffering with this cruel condition.”