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?
Pre pack. I often overpack. I type out my “medical resume”. A brief overview of my condition. I made it double sided, 1 side for “lay person” and the other for first responders. I keep a pack of emergency medication on my person… etc.
thank you. I believe this document has saved my life a time or two , I absolutely believe that. Certainly, with lay people, it provides an insight they wouldn't have had. And for professionals, hopefully it can help them to overcome any preconceived notions or sticking points in their thinking. It' an absolutely brilliant idea! - Warmly, Donna (Team Member)
Can I ask what your condition causes the allergies?
I plan for downtime during the trip and let my family know that they can go about their fun without me.
, that's really smart! It keeps you from exhausting yourself and lets your family do things you might not find as enjoyable. The clear communication on your part is the key and even if trips still have their bumps and misunderstandings, you have done what you can to make your needs very clear from the very start.
Best, Erin, Team Member.
I have Euler's danlossyndromewith Hypermobilty..plus Ms
I can't travel even to my Dr. Or my bones dislocate I was born with Eds hyp... I need a standing Mri And a good Neurologist..
I live 600 k from Sydney
I want to be tested for Ms
I have many Ms problems
Which are similar to Eds Hypermobilty.. have had Ebv
Was very ill. Thankyou so. Much
Blessings 🙌Hi
, it can be difficult to find a provider. I did a little research and found this site: https://www.healthdirect.gov.au/australian-health-services - you can search by the type of services needed and your location. A neurologist should be able to help with MS diagnosis as well. I hope that is helpful! Please keep in touch and let us know how you are doing. (((Hugs))) - Warmly, Donna (Team Member)
