Living with EB Simplex: A series of questionable decisions (and why I regret none of them)

Living with EB Simplex hasn’t exactly been a calm, predictable experience. It’s involved blisters, planning, improvisation, and a truly impressive amount of ice packs. But if EB has taught me anything, it’s that life is basically one long risk assessment and you get to decide which risks are worth it.

Spoiler: I tend to say yes.

I grew up in a family full of DEBRA members who never told me what I couldn’t do. While other people were gently suggesting I “maybe avoid that,” my family took a much bolder approach: try it, see what happens, deal with the consequences later. Was it always sensible? No. Did it teach me resilience, confidence, and a healthy disregard for unnecessary limits? Absolutely.

For a surprisingly long time, managing EB felt like we were making it up as we went along because medically speaking, we kind of were. I didn’t receive specialist EB care until I was in college, which meant that throughout most of my childhood and teenage years, doctors often didn’t really know what to do with me. Appointments involved a lot of squinting, head tilting, and phrases like, “that’s interesting,” which you never want to hear while sitting on crinkly paper. The upside? I became very good at advocating for myself early on when no one else had answers. Someone had to find them.

One of my first regular travel challenges was simply getting to EB appointments at Guy’s & St Thomas’. Living in Yorkshire means train tickets that require emotional preparation and a payment plan. DEBRA’s help with travel costs made a huge difference and more recently, they helped cover something far less exciting but far more life-changing: a two-year insurance policy. Not glamorous, but essential. That single piece of support made it possible for me to temporarily move to Canada and see what happens when EB doesn’t get the final say. Without DEBRA, the extra costs EB brings would likely have quietly shut that door.

Travelling with EBS means every activity starts with an internal meeting. Is this worth it? How bad will tomorrow be? Do I have enough dressings? Somehow, the answer is usually still yes.

Take India, when I travelled there to meet a friend’s family. She was far more stressed about my blisters than I was. We eventually reached a compromise: I’d pretend to take my skin more seriously, and she’d trust that I know what I’m doing. The reward? A hot air balloon ride over the Western Ghats – a once-in-a-lifetime experience that made every sore step worth it.

Airports deserve their own paragraph. I had always been confidently independent right up until the exact moment I wasn’t. I’ve been wheelchair-bound through terminals, mortified but grateful, and I’ve also had to phone friends and family to rescue me from over 100 miles away because I physically couldn’t walk back to my parked car. Humbling? Yes. A deterrent? Absolutely not. These are the moments you laugh about later (usually once the blisters calm down).

Ice skating deserves an honourable mention. I know exactly what 15 minutes on the ice will cost me physically, and I still do it. Why? Because sometimes that ice rink is in the Rockies! EB has taught me that the payoff matters more than the pain — and that some memories are worth a dramatic recovery period and several bags of frozen peas.

Packing for travel is another extreme sport. I either travel with hand luggage only, which is very achievable if you ask nicely for a medical bag! Or I somehow justify a 40kg luggage allowance like I’m relocating my entire life. There is no middle ground. I travel with commitment. If I’m going, I’m going.

After a big career change, the last couple of years have been dedicated almost entirely to travelling for my own growth (not for work). In that time, I’ve made it from Canada to Morocco, Egypt, India and Cape Verde, with plenty of places in between. I’ve floated, climbed, sweated, limped, laughed, and occasionally questioned my own judgement — but I’ve never regretted saying yes.

Some experiences were questionable while others were completely worth everything I had to give to get there. I tried a fish spa once — hated every second, zero stars. I had an iguana climb on me — loved it, although the nails are sharp. I tried learning to surf — loved the idea, struggled with the execution, but I will absolutely do it again. For me, EB doesn’t mean missing out; it just means approaching things with a bit more planning and a slightly higher tolerance for consequences.

One thing I really wish people without EB understood is that we’re not fragile — we’re adaptable. Having EB doesn’t mean opting out of life, it just means doing it differently. With some forward planning, realistic expectations, and a sense of humour, we can still do the things people warn us against. The only real limit is the one you place on yourself.

Thanks to DEBRA’s support — from practical help with appointments to enabling life-changing opportunities like my move to Canada — I’ve been able to keep choosing experiences over fear. Pain is temporary. Memories are permanent. And if a few blisters are the price of a life well-lived, I’ll happily keep packing the dressings and booking the flights.