Top 5 Tips for Traveling with a Rare Disease

• Always keep your medicine in your carry-on luggage. Apart from not losing your medicine if your luggage is lost or needing to treat in an emergency, the checked luggage compartment might not be temperature regulated, which most medicines need to be.
• If you have two pieces of carry-on luggage and, depending on how long you’re traveling for, keep the majority of your medicine in your larger item that goes overhead (I usually put it in a roller bag to not have to carry it!) but keep a couple of rescue doses in your backpack or purse in case you need to treat during the flight and can’t easily access your other bag.
• Don’t forget about your supplies: make sure you have all the supplies needed to administer the medicine in your carry-on. I usually stash alcohol prep pads in many different pockets, so they’re always handy.
• You’re allowed to bring ice! Even though there are liquid restrictions, ice doesn’t count, so if you need to keep your medicine at a specific temperature range, you can bring an ice pack.
• For most airlines, you can bring medicine onboard, and it won’t count towards your carry-on luggage restrictions. Having a dedicated bag for your medicine can be one way to keep it and the supplies all in the same place and help bypass airline bag restrictions.

Aside from medicine, it can be a good idea to bring a spare change of clothes, toiletries, snacks, and other necessities. As someone with HAE, I’m always looking for ways to mitigate stress, so knowing I have the necessities in my bag just in case my checked bag is lost can help with that.

When I was traveling to Kilimanjaro, my flight was canceled, so I had to reroute and take three additional flights. I had packed my hiking boots, a pair of leggings, my down jacket, and basic toiletries in my carry-on bag, so I could start trekking even if I lost my suitcase. A lot of people were also headed to Kilimanjaro and rerouted as I did, and some had all their hiking gear in their checked luggage. We had a very tight connection time, so there was (and always is) a chance the luggage might not make it onboard. If you’re traveling for a specific reason and need specific outfits or gear, wearing it onboard (such as wearing your hiking boots!) or packing it in your carry-on helps ensure that even if your travel plans are disrupted, you can minimize the impact.

I get stopped about every fifth time at security for having medicine. Most of the time, the security guards wave me by once they’ve seen it, but a couple of times, I’ve had to pull out my doctor’s letter that says it’s medically necessary that I travel with the medicine on me before the guards would let me pass.

• I always travel with earplugs and an eye mask to try to be as well-rested as I can when I land. This is also helpful if you’re going to be staying in hostels or traveling long distances no matter what type – by car, bus, train, or plane!
• Download a book or some episodes of your favorite song, podcast, or show to listen to to relax on the journey or while you’re waiting in lines.
• Make sure you have snacks! Keep your energy up, and don’t stress your body any more than travel already will.
• Bring an empty water bottle and fill it up after you get through security.