Safe travels: Exploring the world with HAE

Last updated May 20, 2024, by Susie Strachan
Fact-checked by Patrícia Silva, PhD

Traveling with hereditary angioedema (HAE) can be difficult due to the unpredictable nature of the condition. Additional planning, including knowing where to get help in case of an emergency, making a checklist of travel essentials, and thinking about how to manage your symptoms while away, can help to ensure an enjoyable and stress-free trip.

By following these angioedema travel tips, you can set yourself up to fully enjoy your adventure.

Consult your doctor

Trip planning may include a visit with your doctor to discuss your HAE symptoms and treatment, including what to do during an HAE attack while in transit or at your travel destination.

Parents or caregivers may want to consult their child’s doctor for advice while traveling, including for overnight school trips, outdoor education, and family vacations.

Ask your doctor for a signed medical travel letter that describes the HAE type and how to treat it. Having this with you may be helpful when dealing with an emergency at a hospital not familiar with HAE attacks.

The letter also can be shown to airline staff and airport security as support for why you need to bring HAE medication with you.

Troyce Venturella is a nurse case manager in Florida and HAE advocate with the U.S. Hereditary Angioedema Association.

Diagnosed at the age of 22, years before an HAE medication for the treatment of acute HAE attacks in adults became available in 2008 in the U.S., Venturella was told she shouldn’t leave the country.

“My doctor said to me, ‘You can never be more than an hour away from a major medical center.’ Well, that was no fun,” she says. “But at the time, I was traveling to Haiti, to Africa, to do medical clinics. I also had a trach [tracheotomy] to help me breathe because I was having so many laryngeal swellings. I was so sick at the time, but I needed to travel for work.”

She now carries a letter from her doctor in a plastic document protector that outlines her HAE symptoms and triggers and lists the medications she needs to take.

“It says what can happen to me and the choices for treatment,” she says, adding that the medications allow her the freedom to go on vacation, including her favorite: ocean cruises.

HAE International offers a downloadable emergency card you can fill in with personal information, along with information about HAE and treatment required during an attack.

Research your destination

In addition to creating a trip itinerary and exploring accommodations and activities at your destination, it’s crucial to know which nearby healthcare facilities can treat you.

HAE swelling can be triggered by injury, stress, pain, viral infections, or happen for no apparent reason.

“Checking the hospitals at my destination is a big part of my trip planning,” Venturella says.

While she has worked with hospitals near big theme parks in Florida to ensure they stock rescue medications for people who have an HAE swelling attack, she knows many hospitals will not know what an HAE emergency is or how to treat it.

If your trip involves traveling to an international destination where a different language than yours is spoken, it can be helpful to learn key phrases for discussing HAE treatment. Load a translation app on your smart device or record useful phrases to help you communicate with healthcare providers.

Research the climate and planned activities at your destination. HAE triggers can include allergic reactions to environmental factors such as heat, allergies to certain foods, repetitive motions such as horseback riding or playing tennis, or be caused by physical trauma, such as falling while riding a bicycle.

Considering reaching out to the HAE community. Online or in-person support groups can offer insight and information about potential destinations, including where to get the best care and where to go in case of an emergency.

Make a trip plan

Careful planning can help you manage HAE while enjoying your trip to the max. Some things to do in advance include the following:

• Check that you have enough medication to cover the length of your trip.
• Prepare an emergency plan.
• Consider wearing a MedicAlert ID bracelet or necklace, which can be key in case of emergency, especially if you are unable to communicate.

In the U.S., insurance plans may have restrictions on early refills. It means prescriptions cannot be refilled too far in advance, which can make it difficult to stock up for a long trip.

You may have to wait a month before you can refill your prescription, leaving you short while on a trip, says Venturella, who uses a calendar to calculate her medication refills against her trip dates.

“If you’re a college student wanting to travel to study in Europe for six months, you’d need more than a month’s worth of medications,” she says. “Companies will make an exception, but it’s a process that takes planning.”

You may want to consider purchasing travel insurance that includes coverage specifically for HAE-related expenses and treatments, including emergencies, medications, and a medical evacuation or repatriation to a medical facility back home.

If you’re traveling with family or friends, discuss your HAE symptoms, triggers, and emergency procedures in advance, so they can provide support if needed.

Pack travel essentials

When you have HAE, what you bring in your luggage goes beyond typical essentials. Create a travel checklist to ensure you have everything you need to manage your HAE while away from home.

The checklist may include items such as:

• HAE medications, for both attack prevention and on-demand for stopping an attack, which should be placed in a carry-on bag if traveling by airplane
• medications that help relieve other HAE symptoms, such as pain relievers and anti-inflammatory medications
• a signed medical letter from your doctor and copies of your medical records
• emergency contacts, including your healthcare provider’s contact information and hospitals or medical facilities at your destination, which you should add to your smart device’s contact list and carry a printout
• cold packs to help reduce swelling during an HAE attack.

Venturella checks her HAE-specific checklist before each trip, including referring to it when calculating how much medication she needs to pack.

“I look at the length of my trip,” she says. “I know I have to take my preventive medication every three or four days, so if I’m going to be away from home for eight days, that means I need to bring two doses.”

Then, she plans for delays, such as a flight being canceled, bad weather, or anything that can slow down her trip.

“I always take an extra dose on top of the ones I know need,” she says.

Managing HAE symptoms while traveling

Being aware of common triggers for HAE attacks and knowing how to manage them may help you avoid symptom flare-ups while traveling.

If you notice any early warning signs of an HAE attack, such as tingling sensations or skin redness or rash, get ready to implement your treatment plan, and to seek emergency treatment if needed. If traveling with a companion, let them know that you may need help.

“I keep a journal of what I did each day, just a few notes, that help me establish a pattern, and helps me identify my triggers,” Venturella says. “It also lets me know situations where I need to take a break, have a rest, or just take in the view while everyone else keeps doing the activity.”

Along with dealing with the unpredictable nature of where and when an attack may happen, travel itself can cause stress. Delays in flights, lost luggage, or getting seasick on a cruise are some of the stressors you may encounter during a vacation.

Stress management while traveling can include:

• taking your on-demand medications to stop an attack
• practicing deep breathing exercises, progressive muscle relaxation, or meditation to calm your mind and body.

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.