I wish others knew that...
What is one thing you wish more people knew about living with a rare disease?
Isolation caused by weakness and not being able to stand more than a very few minutes.
, we all need a tribe for support. Do you have a local support system? - Warmly, Donna (Team Member)
I wish more people understood that even when we “look fine,” we may be managing constant symptoms, pain, or fatigue - rare diseases are often invisible, but very real.
That i may look fine, but I may be having a terrible day. Don't judge how i feel by the way I look. Looks can be very deceiving with a rare disease like Myasthenia Gravis.
Potentially deadly at any moment.
, I hear you. While I don't know what condition you live with, I know some can be quite serious and all can be life changing. I do hope you have some people in your life that understand the seriousness of your condition.
Thanks for adding to the conversation here!
Best, Erin, Team Member.
