I wish others knew that...
What is one thing you wish more people knew about living with a rare disease?
It changes day to day and even minute to minute.
, boy, isn't that the truth!
Best, Erin, Team Member.
It's unpredictable. Rare=limited information.
, yep! I think you hit the nail on the head!
Best, Erin, Team Member.
If I say I need accommodation, I am not being dramatic.
, yes! And you should be allowed to ask for accommodations without fear of judgement! Frankly, the world should be more adapted to people with different needs in the first place!
Best, Erin, Team Member.
It is difficult to explain to other what life is like with any rare disease.
, yep. It's really hard when it's not easy to point people to easy online resources and when they have no frame of reference as to what you are dealing with.
Best, Erin, Team Member.
