Karen Kacures, Pompe disease patient advocate, explains how she balances respect for both doctors’ expertise and her own experience.
Transcript
I’ve learned to be really good at this. Where I try to talk very honestly. But I always tell the doctors — or healthcare people — that they’re the expert, but I kind of know my body and being that Pompe is very rare, I’ve done a lot of research myself, and I want them to be able to listen.
I know that they’re the expert. You have to really enforce that. Not like — you’re a know-it-all or something about your disease. But, being it’s so rare that I think many doctors have never heard or seen a patient with it.
So I can bring the information I have and kind of say, this is where I would like to try and get their knowledge if they say it could be helpful for me.
