Carolyn Baldwin, an ATTR-CM patient advocate, shares that asking any and all questions to her doctors is the best way to receive quality care.
Transcript
I don’t know if confrontational is a word I would use as it relates to me. And I say that because this is my body, this is my temple, this is what I’m being held responsible for. So asking questions about things that are affecting me doesn’t always translate to what someone else might think.
So any question is a good question for me, even if it comes out with “No, that doesn’t apply to you.” That’s still a question that I feel like I’m comfortable enough to ask. So I think, again, asking questions. I’ve also been in community with people who are familiar with different behaviors.
Some of the first groups that I got in touch with about amyloidosis, we didn’t all have the same symptoms, we didn’t all present in the same way, but we all had the same animal, if you will. Like, it was still a zebra and the zebra was out there. We knew something was off on each of us and we were all in different age groups. So I think community is important. I think conversation is important. I think being able to articulate what’s going on in your own body is important. And I think being able to ask even those questions that scare you is important. So nothing is off the table for me as it relates to this.
