Traveling With a Rare Disease
Tell us about your travel experiences? How do you prepare for a long or short trip? Do you have any tips to share with the community?
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.
Thank you for sharing about how your traveling challenges have evolved over time as your illnesses require both more frequent special treatments and special meds, too. Having doctors' letters ti get through TSA is a very good plan. I hope this finds you having a happy and relatively healthy holiday season this year? 😀 Gina Miller, Team Member It's been a good season! Traveled to Vancouver to see Taylor Swift and spend a week with my boyfriend who lives in Canda so despite the frustrations it was worth it!
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!Hi
, That is an excellent plan... a dedicated spot for travel needs... for what must get packed ...when traveling, and updating it as needs change 😀
Wishing you many happy trails ahead!Smiles,
Gina Miller, Team Member
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.
, that's a lot to deal with. Have you had to shelf your day trips for a bit? - Warmly, Donna (team member) thank you 🙂
Prior to 2018, I had "only" one rare disease, hypermobile Ehlers-Danlos syndrome. Since the usual issues were nothing special or life-threatening (just painful and frustrating!), I didn't worry about it much. I was a bit careful too because I'd always get sick (travelling or just going anywhere, really... I had an immune dysfunction I only learned about in 2021).
I did have to plan A LOT, bring a lot of braces and medication, but that aside it was ok. I went to China, the Caribbean, travelled in the US (I'm from Canada), and was planning to travel as much as I could.
I got my adrenal insufficiency diagnosis in 2018, and it would mean paying extra for special travel insurance, being extra careful and I definitely would've worried more. Not for like a weekend trip by car, but for anything bigger. I still planned on travelling, but it worried me a lot more, as just the stress of travelling could cause an adrenal crisis!
Since 2020, I definitely wouldn't travel except to rent a cabin or go camping by car, COVID is not something I want, and it's very hard not to catch it travelling. I must say I also would think twice about all the pollution linked to travel.
Last time we rented a cabin wasn't easy, I didn't have much fun, as I was in a lot of pain from having to use stairs and a non-raised toilet and sofa... In fact it's how I realized just how much adaptations we made in our house which we forget but make my life easier!
