Tag Archives: dragons

Engaged Patient

The Edge of the Known World, Revisited

Editor’s note: Nearly one year ago, I wrote about Adam Hayden’s experience of long-term survival of glioblastoma – brain cancer – for which he received a prognosis of 15 to 18 months in 2016. “Long term” survival is relative; at six years, Adam is now even farther out on the edge of the “known world” than […]

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Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

Susan Carr has 185 post(s) at EngagingPatients.org

Check out my: Twitter


Engaged Patient

The Edge of the Known World

Adam Hayden has lived with glioblastoma for more than five years and in that sense is living at the edge of the known world. Only 7% of patients with this form of cancer live as long as Hayden has; he is an N of 1. Most physicians haven’t cared for glioblastoma patients in Hayden’s circumstance; […]

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Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

Susan Carr has 185 post(s) at EngagingPatients.org

Check out my: Twitter