Everyone is finally coming together to help
EB affects people in many different ways – it causes many challenges for me, the least of which includes blisters on my fingers from simply using the keyboard. I’m Heather; I’m a marketing assistant and the world’s only female tank paintball instructor.
My EB affects my hands and feet. People cannot always see when my blisters are at their worst, so sometimes people think I’m lazy or unhelpful often having to take breaks from typing or not being able to get the next round of tea 10 metres away … sometimes the pain is just too much and even short distances are just too far.
And this is just my fairly mild form of ‘simplex’ EB; my partner has had to carry me upstairs before because I couldn’t crawl anymore. You can’t sleep; you can barely eat because you hurt too much. For something to “hurt” someone with EB means it has broken through a pain threshold that lets them walk when other people wouldn’t have got out of bed.
Many doctors and medical professionals I’ve met often have never heard of EB or know how to deal with my wounds. I have to spend a lot of time explaining what will and won’t work for my skin and how it should be treated differently; some medics have disregarded this and caused further injury and pain.
I have had the odd doctor who has heard of EB and usually they are always more understanding of why a ‘minor’ injury can be much more serious for me. I have EB; I’m used to it. I don’t know any different. I know I will most likely live out the rest of my life with skin that is, quite frankly, less than useless. I don’t want this for anyone else.
I shouldn’t have to tell a medical professional about treating my wounds, but I’m even occasionally the source of curiosity in A&E departments having to explain my EB to doctors, nurses and porters. Sometimes I just want to be treated like a person and not a condition.
I am very fortunate to be receiving specialist care from the EB team at a UK hospital – they have been fantastic talking me through new dressings, sorting my shoes out to be comfier, providing medication to deal with the pain and more to make my life so much easier.
This is the sort of information that should be shared with everyone – medical professionals, researchers, and others who also live with EB – and that is why I’m so glad something like the EB World Congress finally exists and is happening!
This is the first time that every one of these groups will be in the same room and talking, sharing useful information with each other. It’s been needed for so long; I’m excited that it’s not only coming together here in the UK so I can be a part of it but people from all over the world are also going to be there.
If every medical professional knew about EB that would be a dream come true for me … not having to explain over and over again why my skin does what it does, not having to be hyper vigilant about what tape they use after a blood test, an understanding that if I say it hurts, it’s a level of pain that most people wouldn’t be able to deal with at that point. I can’t do the research and work out the treatments and a way to stop this … I wish I could.
Despite all of the pain I experience, I consider myself lucky: I can eat most hot foods, I can use a swing (if I don’t hold onto the ropes), I can ride my bike. Not everyone with EB can do these things. I wish there was a way that no-one else has to suffer from the blisters and pain I do. Mostly, I just wish for a life for everyone else that they will never have to experience how EB feels.
If you want to help make a difference in the world of EB, please be sure to register for the 1st Global Congress on EB, or consider becoming a sponsor.