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Frequently Asked Questions 


Can you give me some tips for traveling on an airplane with my AE diagnosis?



It can be overwhelming to go on a flight with a sick loved one. It is best to be prepared the sooner the better.

Once you have decided to travel by plane:

Contact your physician to make sure you are cleared to travel by plane. Ask your physician about concerns and instructions they may have regarding your travel and the medication and devices you will be taking with you. Once cleared medically for the flight review your medications and plan on what you will need to take on the plane as a carry on vs. checked in, inside your luggage. All medication should be carried on if possible to prevent delay of intake.
Declare all medications, medical devices, and storage instructions to TSA Transport Security Administration 855-787-2227. You can call them 72 hours prior to flight. Advise them of any concerns you may have regarding security check in. TSA will process your request and will email you with instructions coordinating your security check in. If travelling within 24 hours, request the assistance of a Passenger Support Specialist when you arrive at security check point. Arrangements for a wheelchair and and support staff upon arrival to assist in carrying belongings and guidance can be made prior to your day of travel.  Request that you be allowed to bring all medications with you as a carry on in the plane, in appropriate storage bags. (cooler bags if needed).
– Diagnoses concerns. AE patients may get anxious or exhibit behavior symptoms. Educating security and airline can help make travel smoother. Have ready a photo identification, medical records, and physician contact information.
– Provide medication list and medication storage instructions. Some AE patients have to take anti-seizure medications, rescue medication (like diazepam), or rescue device (like a magnet for VNS –vagus nerve stimulator). These medications and devices need to be within reach of the caregiver and stored in an appropriate container like a cooler bag.
– AE medication like Tocilizumab injections needs to be stored in a cooler. (syringes need to be cleared by TSA)
Contact your airline at check in regarding passenger assistance boarding the plane and assistance getting from one gate to another. Ask for wheelchair to make moving around easier. Some AE patients get tired very easily and can get flooded with too much going on so the sooner you get situated on a seat the smoother things may be.
TSA Precheck can also make travelling easier. You fill out an application and pay a fee for a 5 year membership. At participating airports, you don’t have to remove your shoes, laptops, liquids, belt, and light jacket.

Guidelines travelling with a medical conditions:

1. If you haven’t traveled at all since diagnosis, consider doing a weekend stay close to home, to help identify any issues (like finding the room, remembering which floor you are on) ahead of time.
2. Bring with you your insurance cards, physician’s phone number and important medical records. (in a computer disc or binder)
3. Make sure you have reservations and confirm them, keep a folder where you can write down confirmation numbers.
4. Provide your family members with your itinerary, including phone numbers.
5. Identify how to get medical help in countries where you do not speak the language.
6. Consider using a travel agent that specializes in planning trips for people with disabilities
7. Plan on addressing jet lag before you leave- try to adjust your sleep schedule a couple of hours to the time zone you will be in.
8. Adjust scheduling your medication schedule as close as you can to where you are traveling a week or so before you leave.
9. While flying try not to sleep too much especially if you will be arriving in the evening.
10. Set your watch to local time so you do not get confused.
11. Drink plenty of fluids.
12. Daylight can reset your internal clock, be aware that you may need to nap to adjust to the different time zone.
13. One trick I have found helpful in hotel rooms is to leave the bathroom light on so I can find it in the middle of the night
14. Finally, Be flexible and have a sense of humor

Being prepared

If you are travelling with someone who has a cognitive impairment, it is best to be prepared for the following circumstances:
The airport environment provides an abundance of sensory experiences that can be overwhelming.
Security and customs checkpoints may cause stress and anxiety.
The passage to the boarding gates through large airports can be long and complex. Even passengers with mild cognitive impairments can become agitated and have difficulty finding their way around.
With specific impairments which lead to confusion or disorientation (e.g., Alzheimer’s disease), there is a risk that the passenger will not pay attention to the safety instructions issued by the flight attendants.
If the passenger disembarks from their flight without supervision, they could get lost in the airport and become increasingly confused and anxious. (photo id will be helpful)
Staying calm and prepared can help keep your loved one calm and safe. Educating the airport security and the airline of AE and symptoms will help you manage symptomatic episodes that may occur during your travel.


Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.

International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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