Annual Review 2012 - DebRA

Case StudyAmy’s Story"EB affects my everydaylife hugely but I wouldadvise anyone who hasEB to live how they wantand to try and get thebest life they can."Amy (left) enjoying a night out with friendsAmy lives in North Yorkshire and has RecessiveDystrophic EB which affects her whole body.Having grown up with EB, Amy has theconfidence to know what's best for her: "I try andtrust my instincts when it comes to my health, Iknow my condition better than any doctor ornurse, that's not to say I ignore their advice, but Ido trust what I think.""I try to avoid hospital. If I'm worried I do go fortreatment, but other than that I stay away. I tryand fit my care around work and not the otherway around although I do have to get up veryearly to be ready in time. I have a bath everymorning and change all my dressings whichtakes around two and a half hours. I needexperienced help with this as my dressings arequite complicated - Pauline is my DEBRA EBnurse and is a great help to me, if anything goeswrong she is there."Amy works three days per week as a teachingassistant at a local primary school: "I've been atthe school quite a few years now so most of thekids know me, but if they don't they're not afraidto ask and are not really bothered once EB isexplained. The staff are great fun to work withand I think I've surprised them with how much Ican do. It's lovely to work with the same childrenover a full school year and I've built a goodrelationship with my class."Amy lives with her family and has good friendsliving locally. She particularly enjoys going tomusic gigs, which act as an unusual source ofpain relief. "I don't think about the pain when I'mat a concert, only afterwards! My friends arebrilliant, they help me with my wheelchair if Ineed it and drive me around when my eyes arebad. We go to the cinema and out for meals - Ican't eat many foods because my oesophagus isrestricted, but there is usually something suitableon the menu. I have a Gastrostomy button in mystomach through which I get extra food at night. Ialso take pain killers through the Gastrostomytube as I can't swallow them.""As for the future, I just hope to carry on as I'mdoing, stay healthy and maybe do some coursesto help me progress as a teaching assistant. Youhave to get on with life as best you can. My EB isnever an issue, it's just something else I have totake into account."Amy (pictured right) with friends13