I wish others knew that...
What is one thing you wish more people knew about living with a rare disease?
Even most doctors don’t understand my disease.
, it is incredibly frustrating wheen you have to help educate your health care team, when you've gone to them for answers and help! - Warmly, Donna (Team Member)
My symptoms are real not imagined. When I tell someone I can’t keep pace or I need to stop and rest I’m not making it up !
, yes! It would be nice if people just believed you when you tell them your limits. I mean, after all, who would know your limits better than you?
Best, Erin, Team Member.
That this is real.... even though outwardly I appear the same.... and then add my Scolisis and Spinal Stenosis...
Unable to mask it anymore... it even shows on my face and using 3 wheel walker is necessary/ not an option..., I hear you. You should never have to explain yourself or your diagnosis, but, unfortunately, when you are diagnosed with a rare disease, you seem to become an educator for your disease, whether you want to be one or not!
The world be a better place if all of us offered more grace, empathy, and understanding to others.
Best, Erin, Team Member.
It’s a constant struggle, physically and mentally
, this is very true! I think others can forget that a rare disease rarely takes a day off!
Best, Erin, Team Member.
