What are some of the biggest accessibility challenges you face in your daily life due to your rare disease?
Accessibility is a crucial part of living with a rare disease, and your experiences can be varied yet also relatable.
Consider sharing your thoughts or experiences about accessibility in the context of physical spaces, healthcare access, communication and understanding, work or education, or social and community inclusion.
Mainly no energy to do anything. It's too hot out side. Yes,few have air conditioning in the car but it takes awhile to get cool with our 115 heat. Than when we go into a store,we have to do it all over again. I can't drive when I am outside I can't see. I can't keep my eyes open. I don't know if that is part of the MG.
, while you're waiting for feedback from the community, I wanted to share this article from our sister site: https://myasthenia-gravis.com/clinical/photophobia-light-sensitivity I hope that helps.
115 degrees! Bless you, I wouldn't be able to breathe! Once it hits 70,, my vitality drains, and combine it with bright light - instant migraine. Stay cool! - Warmly, Donna (Team Member)
