Tips for international travel with ANCA-associated vasculitis, part one

Traveling internationally with AAV? Here's how to start planning your trip

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by Sara Amodio |

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First in a two-part series.

Before I was diagnosed with eosinophilic granulomatosis with polyangiitis (EGPA), a type of ANCA-associated vasculitis, I had lived overseas, in France, Sweden, and the U.K. I’d also spent several weeks in Haiti doing research and providing training in schools following that country’s devastating 2010 earthquake.

My young family loved to travel, and we chalked up many miles to exotic destinations. I was so proud that my daughters felt comfortable being in foreign countries and were confident in their ability to navigate new situations.

But all of this came to a screeching halt when I was diagnosed. I thought at the time that my international traveling days were over and I’d be restricted to domestic vacations. Foreign travel seemed too risky given my symptoms and my immunocompromised state. What would I do if something went wrong? What if I had a flare? All of the “what ifs” scared me and left me a bit depressed that I’d never have the travel-filled life I once had.

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I shared all of this during a session with my palliative care social worker. She responded with something that changed my life and disease management forever: “Maybe it’s not that you can’t travel; maybe you just need to travel with your disease in mind.”

After that session, we began discussing how I could still enjoy international travel while managing my disease. Following are some of the things we discussed, which I have since put into practice when planning an international trip.

Bringing mobility devices

One of my EGPA symptoms is peripheral neuropathy in my feet. I’ve noticed that when I get tired or walk long distances, especially at airports, having a mobility device, such as a walker, is my saving grace.

Because my walker has a built-in seat, I have a place to sit and rest if fatigue kicks in. As an extra bonus, I can put my carry-on bags on the seat while walking.

Granted, some international destinations are not friendly to mobility devices (think cobblestone streets in quaint villages), but I do my research ahead of time to know how I can effectively get around. Sometimes the mobility device can be a pain to manage, but overall, it has helped to preserve my energy and enjoy traveling again.

If you are traveling with a mobility device, be sure to let the airlines and hotels know when booking to avoid any frustrating “How do I get there with my walker/cane?” moments.

Getting meds and vaccines in order

One lesson I learned the hard way was to keep all of my medications in their original containers in my carry-on. While this may take up valuable real estate in a carry-on, it could potentially save you a lot of grief.

I once had a layover for several days in Munich due to a missed flight, and my luggage enjoyed some solo time ahead of me in Rome. Unbeknownst to me, the hotel had down pillows that caused an allergic reaction. Luckily, I had the allergy medication Zyrtec (cetirizine) in its original bottle, so when I ran out of it, I simply showed it to the receptionist, who was able to contact a pharmacy to get me a comparable prescription.

When it comes to vaccines, be sure to let your doctor know of any upcoming travel. Some vaccines need to be spaced according to the type of medication you are on.

Translating your rare disease

One of my biggest fears when traveling overseas was what I would do if I had an emergency. It’s tough enough to explain my rare disease symptoms to English-speaking doctors. What would I do if I had to explain it in another language?

Enter translation apps like Google Translate. I have a narrative of my disease on my phone ready to copy and paste into Google Translate, along with a description of typical severe symptoms in case I need to go to the hospital. Google Translate has an extremely useful microphone with an auto-translator that can be used in a pinch to perform rough translations. I’ve used it with great success when I had to go to Italian pharmacies, for example. Just having this app available to me has given me peace of mind that I can manage my disease while traveling.

These are just a few of the tips I’ve found helpful in managing my disease when preparing to travel internationally.

Next up: I’ll explain how I manage my disease when I arrive at my destination.


Note: ANCA Vasculitis 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 ANCA Vasculitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.

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