Traveling With EDS

Collage of different trips

Travel Advice and Insurance

Flying

There is no indication against being on an aeroplane with a diagnosis of EDS, but it is worth considering the risk associated with long haul flights. If a medical emergency were to happen mid-flight there would be a considerable delay before any medical assistance would be available.

Assisted Travel

Book special assistance at the airport for your outbound and inbound journey. Most airports provide this service and a patient diagnosed with EDS is no exception. Special assistance is also provided by most train operators including wheelchair ramps.

Please note: It is advisable to check with your operator/airport and book in advance.

Airport Sunflower Lanyards

By wearing one of the airport’s Sunflower Lanyards, it will discreetly indicate to staff that you have a hidden disability, and you would like additional support. Airport staff have been trained to recognise these lanyards, and to provide you with any help you may need at various stages at the airport.

The lanyard also “permits access to the family and priority lanes at security as well as the use of special assistance lanes on arrival at the airport.” It will also allow you priority boarding on to the aircraft and special assistance at the onward destination airport.

Please note: Please contact the airport customer service team directly who will be able to provide you with information on their current services and a lanyard, if available. As of December 2020 this initiative is being launched in New Zealand, so may not currently be available at all airports.

Travel Plans

We recommend planning for your vacation, making travel plans will not only help to ensure your safety, it will also ensure you maximise your time away so you can enjoy your break.

  • Where is the nearest hospital with emergency care?
  • Wear your MedicAlert bracelet if you have one.
  • Purchase travel insurance.
  • Most importantly, make memories which will last a lifetime!

Travel Insurance

Travel Insurance is essential and should not cost you significantly more because of a diagnosis of EDS. It is well worth shopping around and visiting comparison websites to get the best package at the right premium.

Traveling by Car

If you are long-distance traveling via car, there are steps you can take to mitigate the affects of travel. Try to travel outside of peak hour traffic, preferably early morning to avoid traveling during the heat of the day.

We recommend taking a pillow and a lap blanket so while traveling you can rest comfortably; the pillow will allow you take the strain off any sore joints, while the blanket can block out sun, or keep you warm. Take frequent breaks on long-distance journeys, stop in towns to use the pit-stop facilities, and have a stretch and walk around a little to clear any stiffness in the joints. Pit-stops are also a fantastic time to grab a bite to eat and hydrate.

Take snacks with you in the car which are easily reached from your seat. If you have Postural Orthostatic Tachycardia Syndrome make sure you have plenty of water on you to stay well hydrated and consume with a salty snack like popcorn or rice crackers, so you aren’t needing to stop too frequently to use pit-stop facilities.

Try to share the driving load if possible, between multiple people so you aren’t too fatigued or sore when you get to your destination. Once at your destination, find some time to rest. Traveling can be taxing on healthy people, let alone people with chronic health conditions like EDS. It is important to make sure you get sufficient rest once at your destination so you can enjoy any activities you have planned without overdoing it, even if this means when planning your trip you head off a day early.

Take something to do during the journey, a good book or an easy craft project such as knitting or crochet, maybe a tablet with some games or access to watch a movie or tv show. Don’t overdo it with your chosen activity, take frequent breaks to avoid strains and headaches. Make a fun music playlist that you can play while traveling.