Traveling with EDS and comorbidities


General

Take someone with you if possible.

Select hotel, hostel or other accommodation possibility like Air BnB, camping or patient houses depending on the distance to doctors office, 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 sitting 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 on the head
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

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 Bags with wheels
Ask for help when getting in and off the train
If you are flexible there are very cheap offerings
ICEs are very comfortable
Weather condition? Strike?

Train

Bus:
Long distance busses are usually very 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. Especially important when the road is bumpy. Also during takeoff and landing 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 adequate fluids are always helpful.

Use light weight luggage.

Possibly use a trekking rucksack with good support system.

 

Neck braces

 

Other instabilities

In case of other instabilities such as the knees, hips or SI joints always wear bandages if you have a long active day ahead.

Memory foam seat cushion for SI joint instability helps especially with hard airplane or bus seats.

Painkiller

 

Seat cushion and blanket

 

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

Lots of fluids, possibly salt tablets and electrolytes.

Support stockings or tights.

Compression clothing (compression underwear).

 

Pain

Painkillers Painkillers Painkillers!

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

 

Medication

 

Emergency information template

In form of an emergency card (filled out by your doctor), an emergency bracelet (lots of providers) or a small emergency booklet.

Important information:

Not too much information; try to stay focussed on the most important. 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, more than one person to be able to reach at least one in an emergency situation
Brief description of the main diagnoses (only the ones which are important to not harm you in an emergency situation and to prevent you from life-threatening conditions).
Medications.
Allergies !!!
Maybe special instructions what has to be done for rare disease diagnoses.

I have an emergency bracelet with scannable code which shows all important details online, 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.

For EDS the EDS organization of your country might offer special emergency cards.

Note: In an emergency situation patients with CCI or other cervical spine instabilities are at huge risk for overbending or manipulating their head. Nobody should rotate or bend your head or force it into any direction. Best way to avoid this is if everyone know were to find and how to put on your neck brace.

 

Emergency information

Emergency information

Emergency documents

Emergency book