Daryl Sirota, a caregiver to four family members with different forms of angioedema, shares how he supports medical visits by listening, taking notes, and helping navigate care.
Transcript
I usually sit in the background and I support, and if they don’t want to complete a task or they don’t want to answer the question, I usually have my little note-taking tool.
I’m absolutely the one that sits in the background and records, with permission, of course, but I take notes on what the doctors are saying so that we can revisit.
One of the most powerful things I found is that as we go to a doctor’s appointment, the more ears you have, the better. So even if we’re visiting the doc that diagnosed HAE, they often have input and feedback that varies from visit to visit. They’re trying different things.
This is a kind of a novel and rare disease. And so whether it’s the doctor that’s aware of HAE, or the doctor that’s never heard of HAE, being able to listen, take notes, and provide input in the way that they can ingest it is important.
