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Aimee
Hometown
Albuquerque, NM
Diagnosed
hATTR amyloidosis in 2023
Started treatment
May 2023
Time to diagnosis
Two years
Family history
Hereditary (Father)

Patient Ambassador

Aimee N.

"I tell my patients' parents: you know your kid. Now I tell myself: you know your body. Same thing."
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Aimee is a pediatric nurse. She has spent fifteen years in a children's hospital, holding hands and holding her own composure, explaining hard things to small people and harder things to their parents. She thought she understood what it was like to be on the other side of the curtain. She found out, at thirty-eight, that she didn't, not really. Her own diagnosis came in the middle of a Tuesday shift. She finished the shift. She drove home. She sat in the driveway for a long time before she went inside. The next morning, she called her charge nurse, and her charge nurse — who had been at her wedding, who knew her kids — said the right things, and arranged the right coverage, and told her to take all the time she needed. What surprised her most was how much of her professional toolkit applied to her own care, and how much didn't. She knew the questions to ask. She did not know how to be the one being asked. She knew how to advocate for a small patient in a big system. She did not know how to advocate for herself. She had to learn it, the way her patients' parents had to learn it, one appointment at a time. She is back at work now, on a part-time schedule. She tells her patients' parents the same thing she has started telling herself: you know your kid, and now you know your body, and that knowledge is real, and you are allowed to use it. She is, she says, a better nurse than she was before. She wishes she had not had to pay this price for the lesson.

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