Travel with refractory MG

Hi friends!

I have severe, refractory MG-diagnosed at onset 2 years ago-no other health conditions. I would very much like to travel overseas by plane or boat but am struggling to find travel insurance for things like emergency treatment (likely intubation and/or plasmapherisis) and medical evacuation.

I'm obviously not planning to go until I am stable and cleared by my team of doctors but I find the thought of travel helps give me some hope.

I currently take Cellcept, Mestinon, and have Ultomiris infusions, in addition to bipap with nocturnal oxygen. I regularly use mobility devices depending on my need from power wheelchair, rollator, scooter, or cane. Everything I have can be portable and used on a plane.

I have read some ships won't accept a passenger with severe autoimmune problems. And air travel can be problematic given the forces during take off and landing for breathing, as well as the constant movement of the plane causing muscle fatigue. I have also read many stories of MGers with significantly fewer symptoms happily travelling and getting insurance.

I hope to improve enough to manage a trip but does anyone have any suggestions regarding medical insurance for pre existing conditions? I have called all the major international brokers and they all said none would insure me.

I am certain a trip, when I am more stable, would do wonders for my mental health. Any ideas?

Thanks!

Jenn