Planning for travel can be overwhelming, especially for people with an autoimmune disease or other chronic illness. Myasthenia gravis (MG) is no exception, and you might worry about the potential barriers and challenges of venturing long distances with this condition.

Members of MGteam note some of the challenges they’ve encountered while traveling with myasthenia gravis, like fatigue and other increased symptoms of MG. “I just got home from a work trip of five days,” wrote one member. “During which my speech slurred, I had trouble chewing, and the double vision returned.”

When traveling with MG, for your comfort and safety, preparedness is key. On your next trip, follow these travel tips for people with MG:

1. Make Flexible Plans

If you live with MG, you know the symptoms can come and go. Because changes in energy levels and symptoms are often unpredictable, it’s important to make your plans flexible whenever possible. For example, you might purchase travel insurance when you book a flight, just in case the stress around your trip triggers an MG flare-up. This travel insurance can include reimbursement for trip cancellation or interruption, medical evaluations, and emergency medical treatments. That way, you can change plans or submit a cancellation on a whim without a financial loss and, if necessary, receive treatment at hospitals abroad.

A flexible itinerary leaves time for rest, so you should avoid overbooking your trip with activities and reservations. Consider your sightseeing priorities and plan your days accordingly. You might also consider scheduling time for rest upon your arrival or before you leave at the end of the trip.

2. Consult Your Doctor

Talking to your doctor before any trip is critical for your safety and preparedness while traveling with MG. Your neurologist knows your condition well and can offer helpful advice based on your travel plans. Book this appointment as early as possible in advance of your trip so you’ll have plenty of time to prepare your prescriptions, immunizations, and other medical services. This will help you set yourself up for smoother travel.

Your health care provider might advise you to stock up on extra medication in case of travel delays or extensions. They might also recommend assistive devices to bring along, like canes or walkers, to improve your mobility and make the most of your trip.

Depending on your destination, you might need specific immunizations to boost your immune system before traveling. However, “live” vaccines may be better avoided in some cases if you’re considered to be immunocompromised. Your doctor can advise you on how and when to get safely immunized.

3. Pack Wisely

When you’re traveling with MG, both what you pack and how you pack matter. Be mindful of your needs and limitations while preparing your bag.

Heavy or overly large luggage may be difficult to handle without help, so travel light. If your plans make light travel impossible, consider shipping large or bulky items to your destination ahead of time. Bags that have liftable handles and wheels can make hauling luggage easier.

Packing early can help ensure you don’t forget any necessary medications, assistive devices, or comfort items you’ll want to have with you on your travels. If you intend to check a bag, keep your prescriptions in your carry-on or personal item so you’ll have them even if your checked bag gets delayed or lost.

4. Carry Identifying Information

Traveling with identification and medical information about your condition can help medical professionals better assist you if you need care while traveling. A medical identification emblem or ID bracelet quickly identifies you as someone with a chronic illness.

You can also benefit from traveling with an emergency medical alert packet and card from the Myasthenia Gravis Foundation of America. The packet explains MG and provides a list of medications. An MGteam member said of the medical alert card, “I used to carry one in my wallet. It would help medical personnel when I couldn’t answer multiple questions.”

Be sure to also travel with:

• A list of your current medications
• A list of medications that can worsen MG
• A list of your allergies
• General information about your medical history
• Your doctor’s phone number
• Emergency contact information of friends or family members

5. Do Your Research

Planning ahead and researching your destination before you travel ensures there are no surprises during your excursion.

Before a trip, research your destination’s climate, weather, transportation options, and layout. Analyze the information in the context of your MG symptoms and plan your days accordingly. If you’re going somewhere with hot weather, for example, be aware that heat can aggravate MG symptoms. Consider bringing a cool vest on your trip or packing ice packs for a day out.

You might also review and print copies of the policies of airlines, hotels, attractions, and tours to plan for any special requests you may need to make. Most establishments make their policies available online. If they don’t, you can call and request them. These policies contain information about the rights of travelers with disabilities as well as information about accommodations or restrictions related to mobility devices.

Be sure to gather information on medical facilities at your destination, too.

6. Maintain Your Healthy Habits

Going on vacation is a break in many of your routines, and sometimes it’s hard to keep up routines related to your health. Do your best to practice healthy habits while you travel:

• Stay on schedule with your medications.
• Choose healthy and balanced meals.
• Get some gentle exercise.
• Get plenty of sleep and rest.
• Use stress relief techniques when necessary.

7. Bring a Trusted Companion

Traveling alone can be risky with MG due to the risk of a myasthenic crisis, a complication that requires emergency care. Even common symptoms like muscle weakness or shortness of breath can be challenging to manage on your own. MG can lead to trouble walking or speaking, and you may need assistance while traveling.

To simplify travel with MG, consider traveling with a companion who knows about your medical condition. Not only can they help with carrying luggage or operating mobility devices, but they can also advocate for your health in the event of an emergency.

8. Know Your Insurance Coverage

Knowing the extent of your insurance coverage can give you peace of mind while traveling with MG. Find out if your health insurance covers medical care at your destination, especially when traveling abroad. Consider purchasing additional health care insurance for travelers if you need it.

9. Set Aside Time to Rest When You Return

Many MGteam members said that travel tends to make symptoms worse or simply leave them exhausted, so consider leaving yourself a day to recover once you return. One member said of a nine-hour road trip, “When we came back I was extremely fatigued, feeling weak with little or no strength.” Another wrote, “Recovering from a weekend trip. In bed for today!”

With a little advance planning, travel may also leave you feeling relaxed and refreshed, like one MGteam member who shared, “Great weekend girls’ trip. Massages and cabin in the woods. My body and mind are rested. Just what I needed!”

Talk With Others Who Understand

MGteam is the social network for people with myasthenia gravis and their loved ones. On MGteam, members come together to ask questions, give advice, and share their stories with others who understand life with myasthenia gravis.

Have you traveled with myasthenia gravis? Do you have tips for traveling safely with MG? Share in the comments below, or start a conversation by posting on your Activities page.