Traveling With a Rare Disease

My daughter is 16 years old and has a multitude of rare conditions. She is truly one of a kind. 18p minus syndrome, polymicrogyria, bile acid malabsorption syndrome are the three major ones. She has a feeding tube and is medically incontinent. I travel with her by plane at least once a year. It is a big undertaking. My first tip is to notify TSA cares. If you're in the United States you let them know when you're traveling and they will meet you at the Airline check-in desk and walk you through security. It is very helpful. I usually take her on vacation for at least a week so I have to travel with lots of medications and all of her specialized formula for her feeding tube. That has to come on the plane because I can't risk it getting lost with luggage. They are usually very accommodating but security does take a bit of time to get through. I also make sure I notify the airline as when I travel I take her special needs stroller with us and check it in at the gate. Walking around the airport is exhausting for her. Even though she can walk, I push her in her chair. Another tip for travelers is pack all your medical supplies in one separate suitcase. If you pack it all separately and not with your clothes they will not charge you for that baggage. I went on Amazon and I large red baggage tags that same medical supplies and I also got stickers for the outside of the suitcase. They do not check inside but they will allow you to take it free of charge. I make sure we pack clothes separately. When we arrive at our destination I will often ask for help. Not all offer this but some do. I have family in Orlando and when we arrived there they usually have somebody who will help me pick up my luggage put it on a luggage rack and they won't even push it all the way to the car rental desk and out of the parking lot for me while I push my daughter in my chair. Again, not all airports offer that. I tip them generously for their help but it is a huge help for me. As I usually have to travel with at least three bags and push her wheelchair. I know for a fact Austin airport in Texas does not offer that help. I wish all airports offered that help. Another thing I do is I make sure that I have change of clothes with her for the plane and pads for her to sit on on the plane in case she has an accident as she does wear diapers. That way there are no leaks onto the seat for the next passenger. I always have plastic bags tucked into my carry-on for wet clothes or pads. I've been traveling with her for quite some time and I've learned a lot of tricks through trial and error. I am an overpreparer. I like to make sure I have everything I need for every situation. I spend a lot of time thinking it through before we leave and making lists to make sure nothing is forgotten before we travel. Another thing I've learned is to always buy travel insurance. You never know when illness or a hospitalization will pop up at the last minute. I also always buy independent travel insurance. Not through the airline or the website I book my itinerary through. It is much cheaper to buy your own insurance policy. That also allows you to save some money by making non-refundable hotel reservations because if you can't make your trip you can still get reimbursed by the insurance company. Hotel rooms are less expensive when you book them non-refundable. Some people like to bring a doctor's note to justify traveling with medications and such but I have never once been asked for any such proof in all the years I've been traveling with her. I hope some of these ideas might help someone.

For me, traveling with rare disease was easy. I have two and before my kidney transplant, I just made sure I had my medications and made sure to have my infusion before I went and all was good. Now things are harder. My transplant was caused by one of my rare diseases so there's that. The medications for that have changed a lot including how I treat my other rare disease. Now, instead of a monthly infusion, I have to do subq infusions once a week. So when I travel, I have to take liquid meds in my carry-on so I don't lose them. Some airports don't give me issues, some do. I always have a letter from my doctor just in case. Then I have to make time on vacation to do treatment and often waste time dealing with side effects. If that wasn't enough, I have to watch what I eat because of my meds from transplant. This will make it hard when I want to travel to other places (for example sushi and soft cheese are no-nos). It get frustrating because I want to experience things I love yet I don't want to spend my vacation in the hospital with food poisoning that normal people wouldn't get.

Before gMG began in 2020 travel was an escape and a relief from the day to day. Now it takes so much planning and foresight (always have to prepare for the unexpected) I find I have created a 'shelf' for travel essentials. Literally, I keep mandatory Myasthenia Gravis information, meds, cooling vests, medical devices etc ready and waiting.

It has made travel less stressful AND safer. As a result I am starting to embrace travel again. Took a while and many lists that always need modification as my gMG symptoms are different now, but I am able to plan trips for something other than medical appointments!

Before 2021, I would make sure that I rested for at least a whole week. I would pack two weeks before, then hubby would help with the bathroom stuff before we left. After we would get home, I would be down and out for a week.


Currently no way I can travel, as I have to go to the ER at times. So we plan day trips around in our state. Currently we are not able to travel as my husband my husband is dealing with spinal stenosis.