What do you wish others knew about ATTR?
There are plenty of misconceptions and a lot of unknown information about ATTR amyloidosis. What's something you wish people understood about the condition, or your personal experience living with it?
That it lowers your energy significantly.
Myself
I actually posted info on FB for friends and family. I listed all symptoms of amyloidosis. My effort for education. I actually asked my cardiologist to test me for it since I have so many symptoms. , that's awesome. How have they reacted to what you have shared? I'm glad your doctor was open to testing. Some members have reported that their doctors won't test, and that is distressing. - Warmly, Donna (Team Member)
That it doesnt follow the rules that the medical community thinks it would. That there are “real” people behind the disease, that it is not always easy to get up and smile, that while it is horrible you can turn around and make beauty out of it..that slow doesnt mean stop and we need to keep fighting for a cure….
Important info on the desease
, how can you help to educate people to understand critical information? Do you have something(s) you generally share? - Warmly, Donna (Team Member)
