Travelling with Loeys-Dietz Syndrome: Prepare to Reach New Destinations

Navigate Your Trip with These Tips

Chronic conditions should not keep people from enjoying their travels. To help make your travels as fun and low-stress as possible, we have gathered the following tips for before, during, and after your trip.

Preparing for your trip

• Make an appointment with your healthcare provider: A study by Gagneux-Brunon et al. (2016) reveals that “ongoing collaboration between the traveller, general practitioner and travel health specialist is likely to yield the best outcomes.”
• Ask for a pre-trip check-up to confirm you are well-equipped to travel. In addition, make sure you have enough medication to last for the trip (and a little extra in case some get lost). Ask if there any recommended vaccines and if they might interact with the drugs you take regularly. Finally, ask for a doctor’s note that details why you have certain supplies and medication in your luggage. A note can help prevent complications at security checkpoints.
• Pack a travel health kit: This kit will include your medication, first aid supplies, health insurance card, and copies of your original prescription. Ensure these objects are in your carry-on luggage, in case your checked baggage gets lost or delayed.
• Create a packing list: Use a packing list to ensure you do not forget any important items. To see Katya’s packing list for travel with chronic illness, click here.
• If you need any equipment, notify the airline well in advance: If you’re travelling by air and need specific mobility equipment, assistance with your bags, or transportation within the airport terminal, contact the airline in advance. For the telephone numbers of the world’s top airlines, click here.
• Contact CATSA and the embassy of your destination: If you would like to learn how to best prepare for the airport security screening process with respect to your medical condition, contact CATSA. Again, do not forget to ask your healthcare provider to write a note listing your condition, the medications prescribed to you, and the reason(s) they were prescribed to manage any difficulties at the airport. You can also speak with the embassy of your destination country to confirm that your medication can be brought into their country.
• Prepare for the unexpected: Find out if your health insurance covers medical care abroad in case of emergencies. If not, consider buying additional insurance that covers health care and emergency evacuation as well as travel cancellation insurance. In addition, carry an emergency alert card (one in English or French and one in the local language) with information about your condition and food and drug allergies, an emergency contact list, and a copy of your medical records. To learn more about LDS complications, click here.
• Travel with a companion familiar with your condition: If you choose to travel with someone or in a group, make sure your travel buddies are knowledgeable about LDS.
• Get information on local medical facilities: Scout out hospitals in the area you are visiting. If possible, get names of healthcare providers in the area to contact in case of an emergency. Let your healthcare provider know where you will be and ask if they can recommend a medical professional. They may know someone personally or by reputation.
• Manage stress: The stress of travelling, especially flying and navigating new areas, can impact your health. To minimize stress, consider planning a route with lots of extra time for getting to the airport, making connections, and finding your way around your destination. Detailed planning helps!
• Avoid planning a trip to areas with extremely hot or cold environments as well as heavy air pollution: These conditions can place additional stress on your heart. Ask a medical professional to confirm if certain destinations are right for you.
• Plan some relaxing activities: It is completely understandable that you may want to explore and do as many unique activities as possible on your trip. However, to minimize stress and over-exertion, consider adding activities that are relaxing for your mind and body. Relaxing activities can include visiting coffee shops, taking short and beautiful walks, or attending an enjoyable outdoor show. If performing more rigorous activities such as hiking or swimming, make sure to know your limits, give yourself time to rest, and find an accessible exit or way to stop the activity.
• Plan to get a car or stay somewhere close to public transport: Planning your transportation can help to reduce walking and fatigue. Consider renting a car for the duration of your trip or staying close to public transport.
• Plan your meals: Scout out restaurants and stores at your destination to help you maintain regular eating habits and find familiar foods. People with LDS may experience food allergies and digestive issues, and may follow specific diets.

For a structured chart to keep track of medications, click here

For the LDSF emergency alert card, click here

While you are travelling

• Reduce discomfort on a flight: Take walks and/or stretch your legs and arms at least once an hour and wear well-fitted or compression stockings.
• Eat well, exercise, rest: By planning your meals (see above), you can make sure to eat well throughout the course of your trip. Include activities that will get you moving and others that will provide you with rest.
• Quality vs. quantity: When it comes to how you want to spend your trip, think about prioritizing your ‘to-do list’. Start with your priorities and move to other items if you have the time and energy.
• Speak up if you need something: Don’t be shy to voice your health-related concerns and preferences – to fellow travellers and places you’ll be visiting.

When you return

• Book a follow-up appointment with your healthcare provider: Once you return from your trip, book an appointment with your healthcare provider. An appointment can help detect travel-related health issues and address concerns or worries you may have.s

Travelling for medical purposes

Medical tourism happens when someone travels to another location for medical care. This can be for many reasons including cost, culture, and accessibility. When applicable, the travelling tips provided in this article can help with medical tourism. Please arrange your travel and procedure with the relevant healthcare professionals, and call our Loeys-Dietz helpline (1-888-LDS-FCAN) for any further support.

To learn more about medical tourism, click here.

For financial aid and medical travel assistance, click here.

For financial health travel assistance for Northern Ontario residents, click here.