Amy's story

"EB affects my everyday life hugely but I would advise anyone who has EB to live how they want and to try and get the best life they can." Amy.

Amy, shown on the right with friend Kathryn, lives in North Yorkshire and has Recessive Dystrophic EB which affects her whole body. Having grown up with EB, Amy has the confidence to know what's best for her: "I try and trust my instincts when it comes to my health, I know my condition better than any doctor or nurse, that's not to say I ignore their advice, but I do trust what I think."

"I try to avoid hospital. If I'm worried I do go for treatment, but other than that I stay away. I try and fit my care around work and not the other way around although I do have to get up very early to be ready in time. I have a bath every morning and change all my dressings which takes around two and a half hours. I need experienced help with this as my dressings are quite complicated - Pauline is my DebRA EB nurse and is a great help to me, if anything goes wrong she is there."

Amy works three days per week as a teaching assistant at a local primary school: "I've been at the school quite a few years now so most of the kids know me, but if they don't they're not afraid to ask and are not really bothered once EB is explained. The staff are great fun to work with and I think I've surprised them with how much I can do. It's lovely to work with the same children over a full school year and I've built a good relationship with my class."

Amy lives with her family and has good friends living locally. She particularly enjoys going to music gigs, which act as an unusual source of pain relief. "I don't think about the pain when I'm at a concert, only afterwards! My friends are brilliant, they help me with my wheelchair if I need it and drive me around when my eyes are bad. We go to the cinema and out for meals - I can't eat many foods because my oesophagus is restricted, but there is usually something suitable on the menu. I have a Gastrostomy button in my stomach through which I get extra food at night. I also take pain killers through the Gastrostomy tube as I can't swallow them."

"As for the future, I just hope to carry on as I'm doing, stay healthy and maybe do some courses to help me progress as a teaching assistant. You have to get on with life as best you can. My EB is never an issue, it's just something else I have to take into account."