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Staring death in the face - stories from people with late-stage disease

Late-stage disease patients are overlooked in memoirs and fund-raising opportunities

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Mary Elizabeth Williams was diagnosed with Stage 4 cancer. In her book, A Series of Catastrophes and Miracles: A True Story of Love, Science and Cancer, she shares her story of facing death and how a radical immunotherapy treatment (which comes from the lessons of AIDS research) restored her to life. 


Williams was interviewed by The Atlantic. My favourite insight she shares is: "Even within the cancer community, a lot of advocacy groups don’t want to talk about people with Stage 4 disease. They want that inspirational story of “I kicked cancer’s butt!” If it’s a darker scenario, or just a more complicated one, you are ignored. That frustrated me as a person and as a reader. I wasn’t seeing stories about people who were living [with the disease] like I was."


References:

1) Surviving Cancer Without the Positive Thinking by Peggy Orenstein. The Atlantic. May 7, 2016 

What is a provocation or insight that might inspire others during this challenge?

1) How might health foundations focused on diseases - stroke, Alzheimer's etc - integrate end of life into their strategic plan?
2) Scientists learn from other research domains, even though their interests may appear to be orthogonal. Is there an opportunity to learn from HIV/AIDS end of life service delivery?
3) What can we learn from late-stage patients, families, friends & colleagues?

*FOR THOSE SUBMITTING TO THE CREATIVE EXPRESSIONS MISSION*

Peggy Orenstein, The Atlantic

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