I wish others knew that...
What is one thing you wish more people knew about living with a rare disease?
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.
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.
