How to Travel With Hereditary Angioedema (HAE): Essential Tips for a Safe and Stress-Free Journey

Start by Seeing Your Doctor Talk to Doctor Work with your healthcare team, including an HAE specialist such as an allergist, to make sure you’re fully prepared. “Make an appointment at least a few weeks or up to a month before the trip if it is going to be for a long duration or travel outside the country,” says Stephen Schworer, MD, PhD , an assistant professor of medicine in the division of rheumatology, allergy, and immunology at the UNC School of Medicine in Chapel Hill, North Carolina. Together, you can talk over your itinerary, make sure your treatment is optimized and your prescriptions are up-to-date, work through any accommodations you may need to request, and obtain a travel letter for medications.e60dc2a1-f33c-4a05-9b50-8e3e8e59762970cc7869-9e9e-4c8c-a641-a74bfc6ecb3d
Manage Medications on the Move Medication Plan Fast, 24/7 access to your meds and on-schedule dosing are the most important parts of traveling with HAE. Check with your doctor if you anticipate any medication disruption or require clearance to travel. Some key tips to keep in mind: Ask your doctor about time zone adjustments. If you take a once-daily preventive or prophylactic medication such as berotralstat (Orladeyo), ask about whether it’s better to stay on your home-dose schedule (for shorter trips) or gradually transition to dosing at the local time (for longer trips), Schworer says. If you take a medication such as donidalorsen (Dawnzera) or a C1 esterase inhibitor (Haegarda) once every two to four days or two to four weeks, you may not need to change what time you take it. Avoid doubling up on prophylactic meds if you miss a dose, he adds. Keep your medications on you. You should always pack your HAE medications in a carry-on bag and keep them with you at all times. When flying, avoid checking meds in packed bags, which could get lost or damaged.e60dc2a1-f33c-4a05-9b50-8e3e8e597629fc33b80a-ccf9-4176-b0a4-5d6ea40b0fba Mind your medication temperature. If you take an on-demand or prophylactic medication that requires refrigeration, such as lanadelumab-flyo (Takhzyro), you’ll need to pack it in a cooler bag.e60dc2a1-f33c-4a05-9b50-8e3e8e597629ace887ac-b8fe-45ea-a4a5-be695043144f Prepare to go through airport security. You’re allowed to carry your medications on the plane, but they’ll need to be screened at security checkpoints.e60dc2a1-f33c-4a05-9b50-8e3e8e59762927e0dff2-d5d6-4726-9184-84a284c6470a Keep your doctor’s note on hand. If you have questions or need more assistance, you can also contact the Transportation Security Administration’s TSA Cares at 855-787-2227 or via its online form within 72 hours of your flight.e60dc2a1-f33c-4a05-9b50-8e3e8e5976295573886d-2ff9-4643-9991-aeedee276f21
The Takeaway Talk to your care team a few weeks before you travel with hereditary angioedema (HAE) to learn how to manage your treatment during your trip. Always carry at least two doses of your on-demand medication and necessary supplies in your carry-on, along with a doctor’s note, and keep your medications with you at all times to ensure fast access if an attack occurs. Reduce stress by planning extra time for travel, eating regularly, and having a clear emergency action plan. Identify nearby hospitals at your destination and have your doctor’s note available in the local language if you are traveling outside the United States.
Pack an HAE Travel Kit What to Pack The list of HAE-related extras you should have in your carry-on isn’t too long, but each item is essential. Make sure you have: Enough Medication and Supplies You should have at least two doses of your on-demand medication , plus adequate supplies such as syringes or IV tubing, sharps containers, and alcohol swabs with you at all times.e60dc2a1-f33c-4a05-9b50-8e3e8e597629fb830094-1d5b-4fd9-9ab1-41f4e74ce9f5 Talk with your doctor about whether you should bring more. “Keep in mind that travel delays increase stress and other triggers for HAE attacks, and other unexpected things may happen while traveling,” Dr. Schworer says. Doctor’s Note or Card It’s wise to carry with you a card listing information about your condition, medications, and contact information for your healthcare team.e60dc2a1-f33c-4a05-9b50-8e3e8e597629eb19ca0d-57e2-4cde-a58d-809e9645ea7e If you are flying, this may be helpful to have on hand if you are bringing medication through airport security.e60dc2a1-f33c-4a05-9b50-8e3e8e597629efbc2c8c-00e3-46bb-9bba-b6a2b8cfe0c5 A Water Bottle Make sure you have easy access to fluids and drink frequently. It’s easy to get dehydrated when you’re traveling, and for some people that can trigger an attack, Dr. Kachru says. Electrolyte packets may reduce dehydration risk. Healthy Snacks Wholesome nibbles keep your energy up when there are long gaps between meals (think nuts, fruit, or cheese and whole-grain crackers). “Not eating for long stretches isn’t a specific attack trigger,” Kachru says. “But it could potentially increase the risk for an attack indirectly by causing a physiologic stress to the system, dehydration, or fatigue from hunger.”
Travel comes with extra considerations when you live with hereditary angioedema (HAE) or care for someone who has it. These can include managing your medications, limiting your exposure to triggers, and figuring out how to handle a possible episode in an unfamiliar place. But that doesn’t mean travel is off-limits. “People with HAE can absolutely travel,” says Rita Kachru, MD , an allergist and immunologist with UCLA Health in Santa Monica, California. “You just want to make sure you have the right preparations in place.”
Optimize Nutrition on the Go Nutrition Tips Smart food choices can help you feel your best while traveling and, in some cases, may act as extra insurance for keeping attacks at bay. Eat regularly. Try to stick to your usual meal and snack schedule to avoid stressing your system, which could increase your risk of an attack, Kachru says. If you’re used to eating every three or four hours, for instance, set reminder alarms on your phone so you don’t lose track of mealtimes. Drink plenty of fluids . Good hydration can help head off attacks. Water, tea, milk, and coffee all count.e60dc2a1-f33c-4a05-9b50-8e3e8e5976294a091e19-eb29-4081-a2c9-afd19c80755e Limit or avoid alcohol. It’s dehydrating, especially when you’re flying, so steer clear, Kachru says. Read food labels if you’re sensitive. Even though HAE attacks themselves aren’t allergic reactions , having an allergic reaction to a food could set your immune system on high alert and potentially set off an HAE attack.e60dc2a1-f33c-4a05-9b50-8e3e8e597629b185edbc-5eae-468c-8d68-4c2ceed7d2f1
Reduce Travel Stress Reduce Stress In addition to ensuring you have and are taking your HAE medication appropriately, there are ways to protect your mental health when traveling. “The most important things are to reduce stress and get enough rest,” Schworer says. To keep overwhelm and fatigue in check, you can: Make a packing checklist. This can help ensure you don’t forget anything.e60dc2a1-f33c-4a05-9b50-8e3e8e5976291b173234-de76-4d91-acb5-11cc239fb625 Set aside extra time. Unexpected hiccups and long lines are less nerve-racking when you arrive ahead of time and know you’ve got time to spare. Consider choosing longer layovers, as well.e60dc2a1-f33c-4a05-9b50-8e3e8e597629ea5881f5-7b25-43ab-9139-7136ef812899 Request accommodations. If you are flying, call your airline to see that each airport on your itinerary offers wheelchair assistance or similar transportation to your gate.e60dc2a1-f33c-4a05-9b50-8e3e8e597629a5465d4f-dbba-4668-9024-f774b4ece54d Have a go-to way to de-stress. Consider breathing exercises or download a meditation app, for instance.e60dc2a1-f33c-4a05-9b50-8e3e8e5976292aafc341-dd5a-47e8-bd4d-39c362c991bf
Prepare for Emergencies Emergency Prep It’s important to have a plan in place for how you’ll manage an HAE attack if one occurs. Consider a few tips. Wear a medical alert bracelet. A bracelet can quickly notify others of your condition if you develop facial swelling that makes it difficult for you to talk. “If you have space on the bracelet, it should say to check your bag or wallet for further instructions,” Kachru says. Print your action plan in the language of your destination. If you are traveling outside the United States to a country where English is not a common language, create clear instructions on what medications you need during an attack and which you should not receive. “People might assume you’re having anaphylaxis and give epinephrine or an antihistamine, but these medications don’t work for HAE attacks,” Kachru says. Identify nearby hospitals ahead of time. Knowing where to go in case of an emergency can give you peace of mind, Schworer says. Have your medications with you at all times. The sooner you can treat your attack, the sooner you can get it under control. Don’t count on hospitals to have on-demand meds for HAE — most don’t, Kachru says. Train your travel companions on your condition. If you’re spending time with people who aren’t familiar with HAE, let them know about the signs of an attack and what to do to help you.
Resources We Trust Mayo Clinic: Hereditary Angioedema: How to Create Your Attack Plan Centers for Disease Control and Prevention: Before You Travel Cleveland Clinic: Hereditary Angioedema Attacks: Triggers and Treatment 101 U.S. Department of Transportation: Wheelchair and Guided Assistance U.S. Hereditary Angioedema Association: Travel

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