Traveling with EDS and comorbidities


General

Take someone with you if possible.

Select hotel, hostel or other accommodation, for example Air BnB, camping or patient housing depending on the distance to doctors offices, hospital and grocery stores.

Take all necessary medications with you (more than necessary, in case you have to stay longer).

Bring extra pillows and blankets for more comfort or in case of freezing.

Ask for help with your luggage!

Take a small camping chair and maybe a gymnastic mat with you to be able to sit or lie down wherever you are.

Plane:
Most airlines offer a free wheelchair service you can use.
During the flight it is helpful to get up and walk around a little bit.
Aisle seats offer more legroom, window seats are nice to lean against.
There are several online portals available where you can book cheap flights.
Weather conditions? Strike?
For me this is the fastest and most reliable transportation.

View of Chicago at night from a plane.

View of Chicago at night from a plane.

 

Train:
Always make a seat reservation, so you don’t have to stand.
Use an additional seat cushion.
If you have to change trains, allow enough time in case of delay.
Use luggage with wheels.
Ask for help when getting in and off the train.
If you are flexible, there are very cheap offerings.
ICEs are comfortable.
Weather condition? Strike?

Going by train can be cheap and comfortable.

Going by train can be cheap and comfortable.

Bus:
Long distance busses are usually cheap and go to many places (even outside of Germany).
If you need more space to move freely, you could book two seats.

Car:
If you are the driver, take a lot of breaks to walk around.
Take another person with you to be able to change positions.
Plan more time to not get into a hurry.

 

Cervical spine instability

For long trips and especially when traveling by car, have your neck brace with you or even wear it. This is particularly important if the road is bumpy, and also during take-off and landing if going by plane.

If you are not the driver in a car, lean your seat a little backwards to take away the pressure of your cervical spine. Sitting on the front seats also helps to absorb shocks.

Cushions, pain killer and an adequate amount of fluids are always helpful.

Use light-weight luggage.

Use a trekking rucksack with good support system.

 

Neck braces

Neck braces

 

Other instabilities

In case of other instabilities, such as knee, hip or SI joint instability, always wear braces if you have a long, active day ahead.

A memory foam seat cushion for SI joint instability helps especially when sitting on a hard airplane or bus seat.

Pain meds.

 

Seat cushion and blankets are lifesavers when sitting on a hard plane seat.

Seat cushion and blankets are lifesavers when sitting on a hard plane seat.

 

Mast cell problems

Bring your own histamine-free food.

Think about where and when to eat. Are there restrooms close by?

Bring emergency medication for a possible mast cell reaction.

 

Dysautonomia

Drink lots of fluids, possibly with salt tablets and electrolytes.

Wear supportive stockings or tights.

Wear compression clothing (compression underwear).

 

Pain

Painkillers Painkillers Painkillers!

Distraction (music, book or a nice conversation with the person sitting next to you).

 

Medication and supplements may help with pain and overall well-being.

Medication and supplements may help with pain and overall well-being.

 

Emergency information template

Emergency information can be in form of an emergency card (filled out by your doctor), an emergency bracelet (lots of providers) or a small emergency booklet.

Important information:

Do not provide too much information; try to stay focused on the most important information. Consider that in an acute emergency situation there is not much time for reading.

Name
Date of birth
Contact persons (parents, husband, best friend, doctors?); If possible, provide more than one contact to be able to reach at least one person in an emergency situation
Brief description of the main diagnoses (only those that are important to avoid any harm in an emergency situation, and to prevent you from life-threatening conditions).
Medication
Allergies
Maybe special instructions regarding your rare disease diagnoses.

I am wearing an emergency bracelet with a barcode that shows all important details online if scanned; another bracelet with engraved information; an emergency card in my wallet; an emergency list in each bag; plus a detailed emergency booklet with more details for my appointments.

The EDS organization of your country might offer special emergency cards.

Note: In an emergency situation, patients with CCI or other cervical spine instabilities have a huge risk of spinal cord injury due to hyperextension or manipulating of their necks. Nobody should rotate or bend your neck, or force it into any direction. The best way to avoid this is if you let everyone know were to find, and how to put on, your neck brace.

 

Emergency information

Emergency information

Emergency information

Emergency information

Emergency card

Emergency card

Emergency book

Emergency book