Living With Epidermolysis Bullosa: Heather’s Story
Rare Disease UK, a campaign run by the charity Genetic Alliance UK, are the organisers of Rare Disease Day for the UK. This blog has been reproduced with kind permission. For more information about their work please visit their website https://www.raredisease.org.uk/
My name is Heather. I’m 26 and living with epidermolysis bullosa (EB) simplex. EB is a genetic skin condition that causes constant pain due to unstoppable internal and external blistering. My EB mainly affects my hands and feet.
EB is a Part of Me
For me, having EB has always been the norm. My brother, dad and grandad all have it, so it was just what our family was like. We have always been very active with outdoor pursuits. I could climb and cave before I went to school and grew up mountain biking and doing gymnastics. Because my Dad always did everything, and normally more than people who don’t have EB, I’ve pushed myself further to do more than my classmates and friends because I was determined that I was more than my condition. I am ME and that’s a superpower in itself!
Now I’m older I’m more aware of my condition, but I live with it, I don’t suffer from it. Most importantly I am not my EB. My EB is part of me… I have to decide what I can do and how it will affect me for the forthcoming weeks or months. Do I go dancing with my friends, and accept I’ll need my wheelchair for a few weeks? Or do I watch and know I’ll be able to walk the next day? Each day I have to choose what I do, but I’ve learnt that if I build in “rest” days I can do anything I want too as long as I look after myself and accept the consequences.
I Choose to #FightEB
With my hobbies and passions and ‘quirky’ outlook on life, I became the world’s first female tank paintball instructor!
For a little bit of scale, there are fewer than 40 people in the world qualified to run a tank paintball battle, and I am one of them. There are days when I get home from working on the tanks (it’s my second job) and I can’t stand up, let alone walk or reach anything off the kitchen worktops, but because I love it, I do it anyway.
For myself, my hope for the future has always been to be happy with where I am and what I have in life. My hope for the future for everyone is that no-one else will have to live through the pain that I do, or see their family and loved ones suffer because of pain. I don’t want my children to have EB. Even though it’s pushed me to be who I am today, never knowing what it is to stand up without pain isn’t something I would wish on anyone.
You Are Not Your Condition
What would I say to other people living with genetic conditions?
That’s hard because everybody’s lives are different but I would say DON’T GIVE UP. You are more than the hand in life you’ve been dealt. Sometimes your body won’t work with you to achieve your dreams, so find a dream you can achieve that day, or wait a little bit, plan how to get there and go do it. You are not your condition; it’s only a part of you. You are so much more than an illness or disease. You are unique.
I’ll try anything just to prove I can do it. To raise awareness of EB and why research into effective treatments and providing care and support is so important, I joined the #FightEB campaign in support of DEBRA, the national charity supporting people living with EB.
To celebrate Rare Disease Day this year on Wednesday 28 February, you can also help raise awareness of EB by wearing something purple and tweeting or sharing your photos on Facebook with the hashtag #FightEB.
You can find out more about DEBRA here.