Carolyn Baldwin, an ATTR-CM patient advocate, shares the importance of asking questions, understanding your body, and working with your care team to interpret information after diagnosis.
Find a specialist near you
More Results
Transcript
Know your body. Do your research. But the problem with doing research on amyloidosis is that the information can be skewed. So you can do research on the internet, but you may not get the most accurate information.
So ask as many questions as you possibly can. I am one to believe that no question is a silly question — particularly when it comes to your health.
I know when I first got diagnosed, one of the things that happened is I got the test results before I got an explanation. And so that sent me straight to the internet and it completely like shook me, because everything that I read was gloom and doom.
And once I talked to my care team, I was like, “Oh my gosh, this is awful.” And they were like, “OK, only part of that applies to you because of these factors in your life. So you have good health, you have a regimen, you have these things. So let’s back out of the things that you’ve already read, and let’s apply the pieces that apply to you, and let’s take away the ones that don’t.”
So asking questions, being in conversation, listening to my body, asking for the things that I thought I might need. I think it’s just important that you know yourself. You know your body.
