Traveling with Ehlers-Danlos Syndrome (EDS) can be challenging, but with the right preparation, it’s absolutely possible. From choosing the best mode of transport to packing essential aids and scheduling rest, this guide offers practical tips to help you travel comfortably and safely.
For many people, traveling is a source of pleasure and freedom. However, for people with Ehlers-Danlos syndrome (EDS), it can present additional challenges. Sitting still for long periods, unfamiliar surroundings, and unpredictable factors can be physically and mentally stressful. Nevertheless, traveling with EDS is possible. With the right preparation and aids, you can travel comfortably and safely.
What is Ehlers-Danlos syndrome?
Ehlers-Danlos Syndrome is a congenital and hereditary disorder that disrupts the structure and strength of connective tissue. Connective tissue is found throughout the body and provides support. It holds the cells of our organs, muscles, joints, and skin together.
People with EDS have weaker connective tissue. This can result in joint problems, such as dislocating joints more easily or having overly flexible joints. Additionally, the skin is more elastic, bruises more easily, and wounds heal slowly. You may tire quickly with light exertion and experience problems with coordination and balance. You may experience heart palpitations or dizziness when standing up. Would you like to know more about other symptoms? If so, visit The Ehlers-Danlos Society.
Tips for feeling safe and comfortable while traveling
Don't be afraid to travel differently than others. Maybe you travel more slowly and make more stops. Maybe you bring items that stand out. That's okay! Your safety, comfort, and energy are more important than what others think. Below are some tips to help you feel safe and comfortable on your trip so that you can enjoy the peace and fun to the fullest.
1. Choose the right mode of transportation
There are different ways to travel, so choose carefully. When traveling by car, you have more control than when traveling by train or plane. You can choose when to take breaks, bring your own seat cushion, and choose your own food for the journey. Of course, this does not rule out traveling by plane or train. It's absolutely possible, but keep a few things in mind:
- - Choose seats with extra legroom, and opt for an aisle seat so you can get up more easily.
- - Request assistance in advance if you need help getting on or off the train or at the airport.
2. Bring your own aids
Your body needs extra support, and you know what you need. So, don't forget to bring the important aids that will make you more comfortable and convenient. Examples include:
- - Seat cushion for hard surfaces.
- - A blanket for cold surfaces.
- - Compression clothing for POTS symptoms.
- - A neck pillow to keep your neck comfortable.
- - A lumbar roll can support your back.
- - A lightweight brace or tape for joints that quickly become overloaded.
- - The Ribcap head protection protects your head in the event of a fall.
3. Schedule rest periods
When you have EDS, it's important to get plenty of rest. Adjust your itinerary to allow enough time for recovery between activities. Consider the following:
- - Schedule rest periods or rest days during your vacation. For example, rest at your hotel or in a nearby park.
- - Choose activities that you can do while sitting or lying down, such as reading a book, playing a board game, taking a boat trip, visiting a museum with plenty of seating, painting, or wine tasting.
- - Choose accommodations with accessible features, such as an elevator, a soft bed, and a quiet environment. You can always check with the accommodation provider to see if these features are available.
4. Prepare for overstimulation
Certain types of travel involve a lot of stimuli. Consider visiting Madrid in the summer, for example. There will be lots of tourists, loud noises, and possible temperature differences. You can bring various items to help control the stimuli, such as:
- - Earplugs or noise-canceling headphones can block out noise.
- - You can also bring sunglasses or a cap to protect against the sun or bright light.
- - Wear comfortable, soft clothing that does not pinch or rub.
- - You may also want to bring a Ribcap for extra head protection in case of balance problems or risk of falling, as fatigue can lead to instability.
5. Don't forget your medication, food, and first aid kit
Bring a spare supply of your medication in your hand luggage and suitcase. Also, remember:
- - Bring medication in its original packaging.
- - Bring a document with medical information. It should be written in the language of the country you are traveling to or in English.
- - Bring food that you tolerate well in case you experience EDS-related gastrointestinal symptoms.
- - Bring a small first aid kit with tape, cooling gel, and painkillers.
Your body is not a limitation; it's a guide!
Although traveling with EDS requires extra attention, it's worth it. Every moment of rest and every detail you arrange in advance helps you enjoy your trip more. The fact that you are traveling despite the challenges is fantastic in itself!
Do you have EDS, and have you traveled recently? We would love to hear from you! Share your experiences and tips with us to help others travel worry-free.
Written by Nico De Wilde