Long trips can be stressful, especially with a rare disease like amyloidosis. Symptoms of amyloidosis vary from person to person, and the disease can affect different body systems depending on the specific type of amyloidosis you have. For example, people with hereditary ATTR (hATTR) amyloidosis are at a higher risk for issues related to the heart (such as cardiomyopathy) and nervous system (like neuropathy). It can also be tough to find the right medical care when you’re away from home.

Fortunately, people with amyloidosis can still enjoy traveling. With some planning, you can make your trip go smoothly. Here are six tips to help you prepare, along with advice from others who’ve traveled with amyloidosis.

1. Ask Your Doctors for Documentation and Referrals

Members of your healthcare team are the best people to help you plan your trip. Consult any specialist clinicians you see, such as your cardiologist (heart specialist). They can tell you if it’s safe for you to travel and provide copies of all your prescriptions and any other documents you may need. This is the most important step for traveling with amyloidosis.

Your doctors can also tell you if you need any vaccines before your trip. If you need therapies such as dialysis, they can help you arrange them at your destination.

2. Buy Travel Insurance

Travel insurance can save you money if you need to postpone or cancel your trip. But for people with amyloidosis, getting travel insurance can be tricky. It might be harder to qualify, and it can cost more. This is a common problem for people with pre-existing health conditions.

“In large airports, I need a wheelchair to get to the gate if it’s far away.”

— A MyAmyloidosisTeam member

Travel insurance policies can also have special rules. For example, some may require you to wait a certain amount of time before traveling. Insurance requirements vary widely. One member shared, “Travel health insurances ask for six months of stability after a heart transplant. That means six months without changes in the medication. I hope to meet this requirement around April, one year after the transplant. We’ve already reserved a cruise in Scotland for next May. I hope my condition will remain stable.”

It’s a good idea to start researching travel insurance options right away, even before you book your trip, if possible. Finding the right travel insurance can take time. You might need help from an insurance broker to help find an insurer that covers people with health conditions. When applying, be sure to disclose all of your medical history as requested. This helps avoid getting denied a claim later. Also, check if your policy includes medical evacuation coverage. This is especially important for people with health conditions.

3. Prepare To Navigate New Environments

For people with hATTR and other types of amyloidosis, peripheral neuropathy — which can cause tingling and numbness in the hands and feet, as well as severe pain and balance problems — can make getting around harder.

OneMyAmyloidosisTeam member said, “In large airports, I need a wheelchair to get to the gate if it’s far away.” Another member shared, “Travel can be a challenge. That’s why we arrange for a golf cart or wheelchair ride to the gate before we leave home.”

Think about your destination too. Will there be a lot of walking? If you’re planning sightseeing tours or visiting a foreign city with cobblestone streets, dirt paths, or stairs, you might get tired more quickly. Look into mobility and accessibility options, like scooter rentals, when planning your trip.

4. Understand Medication Rules and Restrictions

Traveling with medication can be tricky. If you’re flying, make sure your medications are properly labeled and stored. Some medicines might need to be kept cool. Ask your doctor how to pack your meds safely, and check with the airline to make sure you’re following their rules. If you use injected medications, learn the rules for taking them in your carry-on luggage, both in the United States and abroad.

“We travel around the country to see family and have never had any problems with pharmacies accepting the insurance.”

— A MyAmyloidosisTeam Member

If you need to refill prescriptions during your trip, it’s essential to talk to your insurance company before you leave. They can tell you if there might be any issues. Bring a detailed list of all your medications (including brand and generic names, dosages, and how often you take them) as well as a letter from your doctor. Figure out where you can get your medications during your trip, and bring all the documents you’ll need to fill prescriptions.

Many members of MyAmyloidosisTeam have had good experiences when traveling in the U.S.: “We travel around the country to see family and have never had any problems with pharmacies accepting the insurance.”

5. Be Prepared for Emergencies

Even with careful planning, travel plans can be derailed by a sudden health problem. That’s why it’s crucial to have an emergency plan in case you or your loved one needs care away from home. Carry a letter from your doctor that explains your medical history so you can share this with any new doctors you may have to see. This letter should include:

• The type of amyloidosis you have
• Which organs are affected
• Your current medications
• Any allergies
• Contact information for your doctors

Before you leave, talk to your health care team about potential treatment options for unexpected symptoms like shortness of breath or high blood pressure. Ask them what counts as an emergency and when it’s OK to use over-the-counter remedies.

Having a list of nearby hospitals and emergency contacts will give you peace of mind on your trip. Look up phone numbers, hours, and the types of specialists available at these places. If possible, find hospitals and specialists at your destination who know about amyloidosis. Wearing a medical alert bracelet or necklace is also a good idea. It can help others understand your condition quickly in case of an emergency.

6. Take Time To Recover at Home

Traveling can be tiring, especially if there’s a time change or a big difference in climate.

One member of MyAmyloidosisTeam shared, “I flew to Thailand from Chicago, stopping in Seattle. One flight was 15 hours long, and with the connection, I was in the air for close to 24 hours.” They added, “I didn’t have any issues with the flights, but adjusting to the cold back in the U.S. after being in a hot climate was another story.”

Be sure to schedule some downtime after your trip to rest and adjust. If you experience any signs of sickness, like gastrointestinal problems or a fever, contact your doctor.

Talk With Others Who Understand

MyAmyloidosisTeam is the social network for people with amyloidosis and their friends and family members. On MyAmyloidosisTeam, members come together to ask questions, give advice, and share their stories with others who understand life with amyloidosis.

If you’ve traveled with hATTR or other types of amyloidosis, how did it go? Did you get any helpful tips from your support groups or healthcare professionals? Share your experience in the comments, or start a conversation by posting on your Activities page.