“A journey of a thousand miles begins with a single step.” – Laotzu
I simply completed packing my baggage for my first flight in over two years. (Sure, we are able to journey once more!) However whereas a journey could start with a single step for some, journey requires many extra steps and concerns for these of us with uncommon pores and skin circumstances.
I dwell with epidermolysis bullosa (EB), which causes my pores and skin to blister and tear on the slightest contact. These of us with EB are sometimes generally known as butterfly kids. However flying far just isn’t as straightforward for us as it might be for a butterfly. We have to maintain our pores and skin day by day, which implies altering bandages, making use of ointments and performing wound care. We should be cautious 24/7, though we nonetheless get new blisters and wounds day by day and are used to being in ache.
Making ready to journey with EB
Sure, residing with EB is tough, however I’ve by no means been one to let my pores and skin cease me from doing what I need. So after years of COVID-19 making it troublesome for us to journey, I made a decision to securely enterprise out into the world once more and booked a visit with an expensive pal.
I am not used to packing anymore. How a lot will slot in a small purse? Will I would like two units per day? What number of pairs of footwear ought to I pack? Most individuals are accustomed to these questions, however what many do not have to consider is making room for bandages and wound care provides.
The particularly tough half is that I by no means actually know the way a lot I am going to want. At present, my pores and skin could also be effective, however that would change with only a second of inattention. Dwelling with a power situation is unpredictable.
Whereas I have not skilled any main points throughout my travels as an grownup, for which I really feel lucky and grateful, it wasn’t really easy as a baby. My situation was a lot worse after I was youthful. Additionally, as a result of he was a baby who wanted to be taught and discover, he was typically lined in bandages from head to toe.
My mother and father did all of the planning and pondering forward again then. Think about all of the provides you’d want for a visit to the seashore when it’s important to change your bandages day by day.
My journey preparation now contains creating an emergency contact checklist, particularly when touring far or for an prolonged time frame. Since I dwell in Vienna, I typically go to DEBRA Austria, a nationwide assist group for EB sufferers, to collect contact info for folks and organizations that may assist me whereas I journey. There are practically 50 DEBRA teams working to assist folks with EB world wide.
Whereas it is superb that we have now such a powerful world group, I at all times stay up for assembly different members of the group for a pleasant get collectively, not as a result of I would like medical assist. However it is very important know the place to go in an emergency.
Having packed all the things neatly into my suitcase, and nonetheless questioning if I am bringing sufficient bandages, I am going to cross my fingers that my subsequent journey goes easily.
I hope I come again with extra recollections than blisters!
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