by Eric Bersh | Aug 17, 2023
I was born with a congenital heart defect called bicuspid aortic stenosis with regurgitation. When I was 12 years old I was told I needed immediate open-heart surgery. As the anxiety, depression and sheer terror set in, my family tried to distract me by taking me on...
by Eric Bersh | Apr 20, 2022
Editor’s note: When oncology and hospice nurse Theresa Brown was diagnosed with breast cancer, she couldn’t believe how disorganized and unempathic her care was. Ultimately she called it D.I.Y. care, as in Do-It-Yourself: figure out the treatment process, find the...
by Eric Bersh | Mar 1, 2022
In 2004, at age 17, I was diagnosed with an adult-onset muscle disease called limb-girdle muscular dystrophy type 2B (LGMD2B). My diagnostic journey began 10 months prior, the result of a routine blood test after a car accident which yielded concerning biomarker...
by John Novack | Feb 3, 2022
Editor’s note: Annie Brewster, MD, founder of Health Story Collaborative, and a friend to the Society for Participatory Medicine, has just published “The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma, and Loss.” In this excerpt...
by e-Patient Dave | Sep 14, 2018
I joined the board of the Society for Participatory Medicine (sorry, I have to shorten it to SPM) about one year ago. I joined because I honestly think health care is f$#%#’ed up and I want to make a difference. We all agree about the problems, but my views on...
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