How I Stay Safe During Summer Travel With Epidermolysis Bullosa

With summer comes traveling again. For people living with a rare condition, traveling always requires significant preparation, as I discussed in my previous column. When I wrote it, I was busy packing for summer vacation. I packed my beach towel, bikinis, sunglasses — and wound dressings, bandages, needles, creams, and painkillers.

For most people, summer vacation means a break from everyday life. It entails resting, recharging, and slowing down. But for people living with a rare disease, vacations are often paired with extra planning and being prepared for whatever challenges a new destination might mean for you and your condition.

I was born with epidermolysis bullosa (EB), a rare, genetic skin condition that has no cure. While going on holidays, I can’t just put EB on hold like one might do with a job or other everyday tasks. The condition follows me wherever I go and doesn’t care if I need to take my mind off things for a while and relax. It requires skin and wound care and pain management every day. But I learned not to view skin care as a bad thing, and on holidays, I try to give my skin the special treatment it deserves.

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A life without excessive restrictions

While I have one of the more severe types of EB, recessive dystrophic epidermolysis bullosa, it hasn’t progressed too strongly, and I’m able to live without too many restrictions. I can live independently and take care of my wound management by myself.

Still, I must prepare for every possible situation. So while I might not have many wounds at the start of vacation, one second of distraction might cover me in bruises and blisters. I must always bring enough wound dressing for a worst-case scenario. Arriving home with most of my bandages unused is the best feeling, as it means there were no accidents while traveling.

I remember as a child, my parents would bring an extra bag that contained only bandages. I used to be covered in bandages from head to toe. Summer holidays and spending days on the beach meant dressing changes every day, so we really needed a ton of materials. Some trips simply weren’t possible back then, due to the lack of hygienic facilities. We would never go camping, as there wasn’t a sterile place for dressing changes. Today, I can see myself camping, but I wouldn’t go without taking disinfectant!

I consider myself blessed to have traveled frequently and visited many places. I plan to visit even more, and I’m certain I’ll grow stronger from carrying all of those bandages — and maybe a few of my favorite dresses, too.

Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.