HAE attacks make travel more burdensome due to triggers
It requires more rest, planning, and rescue medication
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Way back in middle school, I had my first big travel experience when my parents took us to Hawaii to celebrate their 25th anniversary. Then, in high school, I went on a class trip to England, and my love for travel was solidified.
After being a stay-at-home mom of four and then meeting my now husband, Daryl, a father of three, we traveled to Ukraine for six weeks to adopt our daughter, Leah. Shortly after that, I acquired Lyme disease, which took me out of commission for two years during my treatment and recovery.
Since my illness left me with bouts of chronic fatigue, we stayed rather close to home. However, with all the kids, we managed lots of domestic trips to theme parks, a few national parks, and even a Route 66 road trip one year.
Once Leah was the only one left living at home, we decided to sell our house and travel abroad. While this was quite adventurous given my health challenges, we took it at a slower pace, staying in each country for a month or more and allowing downtime in between site-seeing. I home/world schooled Leah while her dad worked remotely. It was a wonderful education for Leah and allowed us to experience more culture than just tourism. For almost a year, we lived in Israel, Greece, Italy, France, and the United Kingdom.
Upon returning to the U.S., Leah began developing serious, complex health issues. That began our four-year battle for her diagnosis. After seeing numerous specialists, having multiple surgeries, and undergoing genetic testing, she received several rare diagnoses, including hereditary angioedema (HAE). During that time, all of our travel was medical-related.
Shortly thereafter, my health also began to decline. Ultimately, I was diagnosed with HAE with normal C1 inhibitor, formerly known as HAE type 3. Among the variety of triggers of this are vibrations.
I began noticing that longer car trips would cause attacks, particularly half-day trips to doctor appointments that were hours away. Flights also triggered me, so we began building in down days between travel days and during activities anytime we vacationed.
From globe-trotter to homebody
Over the past year, I have limited my travel to important events only, due to my becoming so easily triggered and the fact that our rescue medications involved refrigeration, IVs, sharps disposal, and more. Fortunately, while at the U.S. Hereditary Angioedema Association conference last summer, we were excited to hear about a new oral rescue medication. This is much more convenient and definitely promising for my travel bug.
Last fall, we took a short trip for a family gathering. It was only for a weekend, and I had my new emergency medication, so I thought it would be manageable. Unfortunately, that wasn’t the case. We didn’t have the luxury of allotting rest and recovery in between commitments, so it was rather overwhelming. I have other medical conditions that also cause inflammation and other complications, which is very stressful. And stress is one of the most elusive yet impactful of all HAE triggers.
Next, we were all super excited about the maiden voyage of the Rare at Sea Cruise in February and March of this year. We booked it early last year and were thrilled about our first-ever cruise. It was great having our own room, excursions, meet-and-greets, dining, and entertainment all in one place. I could rest whenever I needed. The one thing I didn’t plan for was that crazy symptom-causing trigger, vibration. Sadly, I needed rescue medication several times during the trip. However, it was amazing to connect with others in the rare disease community.
Following the cruise, Daryl had a conference to attend in Florida, so we stayed another week. He and Leah enjoyed the theme park rides while I did a little shopping and a lot of resting. Unfortunately, the flight back was also very triggering. We had to be rerouted due to storms and were grounded overnight, all of which induced further stress and attacks for both my daughter and me. By the end of the trip, we were all looking forward to being back in Colorado, in our own beds, snuggling our emotional support kitties. I must say that being home never felt so good!
It has taken me the better part of a month to recover, and I feel less inclined to travel again anytime soon. While I’m certain it wasn’t my last hurrah, I believe that I will be a tried-and-true homebody for the foreseeable future. Well, at least until we have a reliable teleportation portal without vibrations.
Note: Angioedema 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 Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.
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