Essential travel tips for people with hemophilia B

Last updated March 5, 2024, by Susie Strachan
Fact-checked by Joana Carvalho, PhD

Traveling with hemophilia B can present its challenges, but making advance preparations for your trip — including knowing how to manage flare-ups and where to get care in case of an emergency — can help you feel prepared ahead of your journey.

Hemophilia B is caused by a defective or missing blood clotting protein called factor IX, which is needed for the blood to clot. For people with the disease, this potentially can lead to spontaneous bleeding episodes on the road, on the seas, or even in the air while traveling.

Traveling with factor replacement therapies — a standard hemophilia B treatment that involve administering a working version of the missing or faulty clotting protein — is just one of the ways you can give yourself the freedom to travel while knowing you can manage your bleeding disorder. Being prepared to handle unexpected bleeds will aid you in staying safe with hemophilia B while traveling.

Consult your doctor

After you decide on where you’re traveling, you’ll likely want to speak with your healthcare providers, including a hematologist or other specialists, to get their best travel tips.

Discuss the destination, length of the trip, and any specific activities you may be doing. Be sure to let your doctors know if you’re planning any strenuous exercise or physical activity during your trip.

Healthcare professionals can give you advice for managing your hemophilia B, including what to do in case of bleeding, reviewing your treatment plans, and addressing potential risks based on your itinerary. They may check whether you are in a healthy condition to travel, and if you need any vaccinations before leaving.

If you are flying, ask your doctor for a signed medical travel letter. This lets the airline staff and airport security know about your medical condition. It also details the reason why you are carrying medications for hemophilia B, which likely will include factor medicine, a diluent liquid, needles, disinfectant, and a sharps container.

Some countries have specific regulations regarding the transportation of medications and needles, especially if they are injectable. You’ll want to be especially prepared for any hemophilia B international travel.

The medical letter should address the importance of having uninterrupted access to hemophilia treatments during the journey. This may help ensure a smoother travel experience. If traveling internationally, consider carrying a second copy of the letter written in the primary language of the country you are visiting. Samples of this kind of travel letter can be found online.

If you have concerns about flying with medication for hemophilia B in the U.S., you may want to contact the Transportation Security Administration at 855-787-2227, within 72 hours of your scheduled departure, to ask any questions you may have about screening policies, procedures, and what to expect at security checkpoints. The TSA Cares program can assist you through the screening checkpoint. Automated information is available by calling 866-289-9673 at anytime should your call be before or after scheduled hours.

Research your destination

Along with planning your itinerary and researching where to stay and what to do, it’s important to find healthcare facilities you can access near wherever you’ll be staying.

Start by identifying healthcare facilities that are equipped to handle hemophilia emergencies, including hospitals or hemophilia treatment centers that have experience in treating bleeding disorders. Write their locations, contact information, and available services on paper or in a planner, or enter it into your smart device.

If you’re heading to an international travel destination where a different language is spoken, learn key medical phrases, especially those related to hemophilia. It may be useful to jot those in your notes for easy reference. Use a smartphone translation app that can translate your conversation in real time or record phrases in advance. This may help you communicate better with healthcare providers in case of an emergency.

Consider the climate and planned activities at the destination. Extreme temperatures, high altitudes, or certain activities may pose challenges — including dehydration, fatigue, and increased risk for falls, injury, and bleeding — for someone with hemophilia.

Dress for the weather, stay hydrated, rest when needed, and avoid high-impact activities.

Reach out to the destination’s hemophilia community. Online forums, support groups, or contacting local hemophilia organizations can offer insights and information from local people with hemophilia, including where to get the best care and where to go in an emergency. This is especially helpful for hemophilia B international travel, so you don’t lose any time in getting care should an emergency arise in a different country.

Prepare your travel essentials

When traveling with hemophilia B, packing essentials goes beyond choosing the right clothing or bringing your passport and local currency.

Start by considering how long you will be traveling and the frequency of your treatments. Be sure to have an ample supply of hemophilia therapies and related medical supplies — add a few extra days’ worth in case of delays, loss, or damage.

Given that factor replacement medications may need to be refrigerated and be kept away from light, you may need to carry them in a portable cooler or insulated bag.

Also, to keep the medication effective, don’t put it into your checked luggage in the cargo hold of an airplane, or leave it in the car when traveling in climates where it can freeze or get too hot. Instead, when traveling by airplane, pack all medications and medical supplies, which should be clearly labeled, in a carry-on bag that will be with you at all times. That’s also a good idea for traveling by car or using other forms of ground transportation.

Talk to a healthcare provider for additional advice about transporting your medications.

Assemble a medical travel kit that includes:

• medications in the original container
• medical records, including medication prescriptions
• a medical letter signed by a doctor
• emergency contact information
• other documents, such as a treatment card that outlines emergency care for hemophilia
• first-aid supplies such as wound closure strips, nosebleed supplies, and compression bandages.

Make sure the kit is easily accessible during your trip, both for your usual treatments and for potential medical emergencies.

Wearing a MedicAlert ID bracelet or necklace is useful in case of emergency, especially if you are unable to communicate.

Consider buying travel insurance that includes coverage for medical emergencies related to hemophilia. Confirm the insurance covers the cost of factor concentrates, hospitalization, and other possible medical expenses that could come up. It’s also good to scope out medical centers at your destination that will accept any health insurance you may have.

Inform airlines and the places you are staying in advance about your medical condition. Work with the airline on arrangements, such as ensuring proper storage for medication during the flight. Call your hotel beforehand about specific requests, such as having refrigeration for factor concentrates.

When traveling with others, educate your companions about hemophilia, including the signs of bleeding and the steps involved in administering treatment. This knowledge can be crucial in the event of an emergency and help you in staying safe with hemophilia B while traveling. In addition, for international travel, having educated companions may help in finding hemophilia B treatment overseas.

Plan your treatment regime

Depending on the length of your trip, you may need to plan for additional factor infusions and other treatments. That may include having to visit hemophilia treatment centers along your route.

To locate a hemophilia treatment center, check:

• the Centers for Disease Control and Prevention’s searchable list of hemophilia treatment centers in the U.S.
• the World Federation of Hemophilia’s global treatment centers directory.

If you’re traveling across time zones, discuss any adjustments to your treatment schedule with your healthcare providers. They can provide guidance on when to administer factor infusions to maintain the consistency of your treatment plan.

Keep a record of factor infusion treatments while you’re traveling so you can discuss them with any doctors you may have to see while on your trip. This also will help in updating your healthcare team, if necessary, when you return home.

Unfortunately, there’s always the potential that medication can get lost or damaged. Discuss this possibility with your healthcare provider in advance or find one at your destination who is familiar with hemophilia B. Both can offer guidance on obtaining replacement medication. It could require coordinating with local healthcare facilities, pharmacies, or a treatment center.

It also may be possible to have a supply of factor replacement medication shipped to your destination.

Minimize risk of injury

By carefully selecting activities appropriate for hemophilia B, wearing protective gear when necessary, and adopting a proactive approach to health and safety, you can minimize the risk of injury while traveling.

A healthcare provider can help you make informed decisions, taking into account your health status, fitness levels, and potential for joint injuries.

Whenever possible, opt for activities that are low-impact, such as swimming, walking, and cycling. These are considered to be safer options compared with high-impact sports or physical activities that involve vigorous contact.

Traveling to different time zones also may cause jet lag, which can leave you feeling extra tired or off-balance, and may make you more prone to falls, injury, and bleeding episodes.

Prepare for unexpected bleeds

Recognizing hemophilia B symptoms when they occur, and any early signs of bleeding episodes, can help you take prompt action to manage unexpected bleeds.

It’s important to pay attention to signals from your body. If you experience pain, fatigue, or any discomfort, listen to these cues. Other symptoms that can accompany or be associated with bleeds include:

• bruising of the skin
• joint pain, swelling or limited range of motion
• warmth at the bleeding site
• muscle pain, tingling, numbness, or other sensations.

If you are experiencing symptoms of joint or muscle bleeding, or if you have an injury, follow the RICE protocol. Those steps are:

• Rest
• Ice the affected body part, using a cold pack
• Compress the affected body part, using a compression wrap
• Elevate the affected body part, if possible.

If it’s possible, self-administer factor replacement. If you’re with someone who knows how to do it you also can ask them.

Avoid the use of aspirin and nonsteroidal anti-inflammatory drugs (NSAIDs), which can increase the risk of bleeding. Talk to your healthcare provider about alternate pain relievers.

In severe cases or if bleeding is excessive, seek emergency medical care immediately.

Useful resources for your trip

Resources for planning and ensuring a smooth trip include a variety of hemophilia-focused websites and hemophilia patient and caregiver forums, all with travel tips.

These include publications such as the:

• National Hemophilia Foundation’s Travel and Vacation Planning
• Hemophilia Foundation of America’s Away We Go
• Centers for Disease Control and Prevention’s Travel Safe
• Canadian Hemophilia Society’s Bon Voyage.

The forums at Hemophilia News Today are another resource for speaking with other people about taking trips when you have hemophilia B so you can ensure your safety traveling with hemophilia.

Hemophilia News Today 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.