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Shirley
Hometown
Sacramento, CA
Diagnosed
hATTR amyloidosis in 2014
Started treatment
August 2015
Time to diagnosis
Three years
Family history
Wild-type variant

Patient Ambassador

Shirley C.

"I taught children for thirty years. Now I'm teaching doctors how to listen."
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Shirley taught third grade for thirty years in the same brick building on the same tree-lined street. She knew the names of her students' parents, and then their children, and then sometimes their children's children. She was the kind of teacher who kept a cardigan on the back of her chair and a tin of cookies in her desk drawer. She never expected to find herself, at sixty-eight, learning a new vocabulary in a language she had no interest in speaking. The diagnosis came in late spring, just after the school year ended. Shirley was on the porch when she got the call, the dogwoods still in bloom. She had retired only the year before. She had plans — a garden, a trip to see her sister in Oregon, a list of novels she'd been saving. The illness, she says, did not so much arrive as interrupt. What surprised her was how much teaching had prepared her for it. She knew how to ask questions. She knew how to wait for an answer. She knew that the people in front of her — doctors, nurses, schedulers — were doing their best inside a system that didn't always make their best easy. She brought patience and notebooks and the same calm she once brought to a roomful of eight-year-olds, and slowly, the appointments stopped feeling like a foreign country. Now she leads a small circle of newly-diagnosed patients at her local hospital. She tells them what she tells everyone: write it down, ask twice, bring someone with you. She still has the cardigan. She still has the cookies. The students are different, and the lessons are harder, but the work, she says, is the same.

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