April 25, 2022

Advocating for a sick parent by confronting physician bias

"I spent the first three days sitting next to my dad’s hospital bed, watching his chest rise and fall slowly. He was asleep the majority of the time, fighting off something unknown. Anytime he moved, I jumped up from my chair and stood where he...


"I spent the first three days sitting next to my dad’s hospital bed, watching his chest rise and fall slowly. He was asleep the majority of the time, fighting off something unknown. Anytime he moved, I jumped up from my chair and stood where he could see me just in case his eyes fluttered open for a split second. I wanted him to know that I was there, that I cared.

I sat for hours listening to the unfamiliar noises in the room, like the IV pump, which sounded like a miniature helicopter hovering nearby. As the doctors and nurses came in and out of his room, running tests, trying to figure out what was wrong, I repeatedly had to say to them, 'This is not his normal. He has late-onset Huntington’s disease (HD).'"

Erin Paterson is a writer and the author of All Good Things: A Memoir About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness.

She shares her story and discusses her KevinMD article, "Advocating for a sick parent by confronting physician bias."

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