I Believe in Research. So Why Was I Hesitant to Join a Trial?

To everyone touched by transthyretin (ATTR) amyloidosis; through diagnosis, genetics, or love, come sit with me for a moment.

I believe in research. So why was I hesitant when my care team suggested I consider a clinical trial?

The conversation happened after my annual follow-up at the amyloidosis center.

"I know we didn't discuss this during your visit, and I'm sorry to bring it up now," the nurse practitioner said. "During our team discussion about your case, we thought you might want to consider a particular clinical trial."

She was thoughtful and gentle in her approach. There was no pressure, just information and an opportunity to think about it. Still, I was caught off guard.

Not because I don't understand clinical trials. Much of my career has been spent in clinical research. I've seen therapies move from investigational products to approved treatments and watched patients benefit from them.

I am a carrier of the V122I TTR mutation. I have some symptoms and a family history, but years of testing have been largely negative, borderline, or inconclusive. When I asked whether I would even qualify for the trial, the answer was "maybe."

That simple word opened the door to much bigger questions.

Hear the rest of the story and read the full article within the Health Union ATTR Community below.

I Believe in Research. So Why Was I Hesitant to Join a Trial