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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?

  1. 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.

    1. , that's a lot to deal with. Have you had to shelf your day trips for a bit? - Warmly, Donna (team member)

    2. thank you 🙂

  2. 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!

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