Jessica’s EB story: dancing through blisters

I’m Jessica and I know I look like any other regular 29-year-old, except I’m not. I have epidermolysis bullosa (EB), also known as ‘butterfly skin’. I’m very fortunate to have the less severe type of EB, as does my brother and dad, but trust me, every day there is a blister causing some sort of pain. Having EB means that my skin is incredibly fragile, it blisters, tears and bruises so easily. Mainly on my hands and feet but it can be anywhere at any time. This is my EB story.

Childhood in blisters

I grew up just thinking blisters were a part of everyday life. My parents would always get me the expensive school shoes hoping that they wouldn’t give me blisters but I always got them no matter what. My earliest memory of having blisters is walking the whole of Paris in a day and coming back to our campsite and my dad having to burst mine and my brother’s blisters. I hated every second of it because they hurt so much but walking with the blisters hurt even more. I was always active when I was little, joining cubs and scouts and dance classes so to me blisters were normal.

Mountains and misunderstandings

When I was in college, I had the chance to go to Tanzania and teach at a school there and we also had time to explore the amazing country. On my 17th birthday, I was incredibly lucky to climb up to the first base camp of Mount Kilimanjaro. Every step on the way up was fine, but coming back down I realised blisters had formed. I’d worn the shoes many times before but because of the heat and friction, I got blisters and pressure sores. Only when I got back to the bottom did I realise how badly my feet had been affected. The blisters were the size of £2 coins all over my feet.

I had to soak my feet in a bucket of dirty ice-cold water and use what I had on-hand and try my best to keep them clean for the rest of my trip. My teachers didn’t understand the pain I was in and just encouraged me to carry on going. I remember my headteacher being shocked by what had happened to my feet, I just explained it was another flare up for me and I had to waddle everywhere. I had to be on crutches when I got home because they were infected and so they could heal properly, which then meant I got blisters on my hands. It was like a never-ending cycle of blisters.

Finally, an EB diagnosis

When I was 18, I had a routine dermatology appointment, and the doctor referred me to an EB clinic as she thought I would maybe get some answers. I had just started my university degree in performing arts, specifically dance, when I was told I had EB. I was shocked and happy to know that finally the pain wasn’t all in my head. We went on to have genetic testing done and my brother and dad also have the same type. It was at this stage I learnt about DEBRA. DEBRA were amazing, giving us all the supplies and information we needed and answered any questions we had. It finally felt like we had been heard.

Dancing through doubt

Throughout my time at university, my lecturers never understood why some days I couldn’t even walk, never mind dance as my blisters were too painful. They would always look at me like I was trying to skip class on purpose, but I love dancing, and it made me so happy. In my final year, my teacher told me I would never graduate and never perform on a stage. But oh, did I prove her wrong! My final dance piece at university was about living with EB, the pain, the mental toll it takes, the hospital trips and there wasn’t a dry eye in the room when I finished.

If it wasn’t for my parents’ support, I don’t think I would have made it through university or made it to where I am today. They are my number one support system when things happen, my dad is there to burst my blisters when I can’t bring myself to even look. My mum is there to keep my spirits high, even joking when she gets blisters, but she gets them by proxy. 

My dream job

I’m now very fortunate to be doing my dream job, working onboard a cruise ship exploring America and the Caribbean. I’ve been able to walk on a glacier in Alaska, swam with dolphins in Mexico, zip lined between mountains in St. Maarten and walked around so many amazing cities in the world.

I’ve hosted famous game shows on stage to thousands of people and danced in sparkly high heels in shows. Was I in pain? Yes, but I bandaged my foot up and went for it. I always wear sparkly high heels in work and if I don’t then my friends know something is wrong.

Some doctors have called me wild and told me to get a desk job, but I will never let EB stop me from achieving my dreams. They are always shocked when I mention my job as they don’t think people like me should be doing things like this. I know that I wouldn’t be living to my full potential if I let EB take over my life every day. In fact, our hospital visits consist most of the time being told that my family and I are baffling! I work in the Caribbean heat which isn’t good for blisters and my little brother is a police officer. My dad was in the army for seven years and then a police officer for another 25 years, so we don’t believe in doing things by half!

My EB solutions

I work six-to-eight months straight with no days off in the Caribbean heat, the blisters are extreme, but I’ve been able to find solutions so that I can still work. They include my very own pair of work crocs that match my uniform, bathing my feet in bowls in my tiny cabin bathroom, sitting in work with a Ziplock bag of ice over my feet and many more things just to keep me doing what I love. I’m so lucky that my company has adapted so that I can still work even when my EB flairs up badly. Whilst I’m away travelling the world, I’ve been able to direct my onboard doctors to the DEBRA website so they can understand what EB is whenever I have problems which has been a huge help.

Spreading awareness

I want to inspire people to go for their dreams. EB may bring dark days, but I’m so lucky that I have the support of DEBRA, my family, my boyfriend and friends that encourage me to keep going.

Remember: don’t let anyone dull your sparkle!