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?
Myself
Hi
, have you told anyone about your diagnosis? - 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)
Currently there’s no medication to prevent amyloids from going into the heart. Only after amyloids are in your heart that you are put on medication. I don’t understand why the same medication cannot be taken prophylacticly.
