When Traveling With a Skin Condition Like EB, Preparation Is Key

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by Lena Riedl |

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“A journey of a thousand miles begins with a single step.” – Laotzu

I just finished packing my bags for my first flight in more than two years. (Yay, we can travel again!) But while a trip may begin with a single step for some, traveling requires many more steps and considerations for those of us with rare skin conditions.

I live with epidermolysis bullosa (EB), which causes my skin to blister and tear with the slightest friction. Those of us with EB are often known as butterfly children. But flying away isn’t as easy for us as it would be for a butterfly. We need to take care of our skin every day, which involves changing bandages, applying ointment, and performing wound care. We need to be careful 24/7, though we still get new blisters and wounds daily and are used to being in pain.

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Preparing to travel with EB

Yes, living with EB is hard, but I’ve never been someone to let my skin stop me from doing what I want. So after years of COVID-19 making it difficult for us to travel, I decided to safely venture out into the world again, and booked a trip with a dear friend.

I’m not used to packing anymore. How much will fit in a small carry-on bag? Will I need two outfits per day? How many pairs of shoes should I pack? Most people are familiar with these questions, but what many don’t have to think about is leaving room for bandages and wound care supplies.

The especially tricky part is that I never really know how much I’ll need. Today, my skin might be fine, but that could change with just one second of inattention. Living with a chronic condition is unpredictable.

While I haven’t experienced any major issues during my travels as an adult — for which I feel lucky and grateful — it wasn’t that easy when I was a kid. My condition was much worse when I was younger. Also, because I was a kid who needed to learn and explore, I often was covered in bandages from head to toe.

My parents did all the planning and thinking ahead back then. Imagine all the supplies you’d need for a trip to the beach when you must change bandages every day.

My travel preparation now includes creating a list of emergency contacts, especially when I’m traveling far or for an extended period of time. Because I live in Vienna, I usually turn to DEBRA Austria, a national patient support group for EB, to collect contact information for people and organizations that could help me while traveling. There are nearly 50 DEBRA groups working to support people with EB globally.

While it’s amazing that we have such a strong global community, I always hope I’ll meet other members of the community for a nice get-together, not because I need medical help. But it’s important to know where to turn in case of an emergency.

Having packed everything neatly in my suitcase, and still wondering if I’m bringing enough bandages, I will cross my fingers that my upcoming journey goes smoothly.

Hopefully, I’ll return with more memories than blisters!

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.


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