Patient Involvement

November 16, 2018

The Art of Slowness: The Abstract and Concrete in Chronic Illness – Experts by Experience

By kozachek kozachek

The desire to have control over one’s environment, and to have access to the fruits of life and labor, burns consistently in every heart. In the face of health adversity, realistically evaluating your ability, and pacing accordingly, is my best approach to achieve success. But this can be a challenge within our cultural paradigm of […]

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Tags: Ehlers-Danlos Syndrome

November 2, 2018

Stories Matter: Why You Should Embed Patient Stories at the Heart of What You Do – Experts by Experience

By Marie Ennis-O'Connor MarieEnnisOConnor

From time to time, the Experts by Experience series features columns–Knowledge Translation–by guest authors who underscore the need for building an engaging, collaborative health care culture. Knowledge Translation columnists include health care leaders, clinicians, researchers, and marketing and communication professionals who translate the importance of integrating first-hand experiences of patients and caregivers, in ways that are meaningful and relevant, to engage and expand the dialogue on […]

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Tags: story telling

October 19, 2018

A Call to Courage – Experts by Experience

By laurakieger laurakieger

“Now is not the time to get scared.” Those are the words of Dr. Howard Kaufman, one of the scientists who approved a gene-editing human study conducted in California in late 2017. The patient, a man named Brian Madeux, suffers from a rare inherited metabolic disease, and this clinical study is the first attempt by […]

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September 21, 2018

Stepping into Self-Advocacy

By katesheridan katesheridan

On my first day of 11th grade, I suffered from a cardiac event. My dad called 911 while I focused on trying to breathe. The Emergency Medical Technicians (EMTs) arrived quickly and loaded me into an ambulance. Laying on the stretcher, I hazily remember seeing a firefighter above me. “Nice sneakers,” he said, with a […]

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August 17, 2018

Coping With Loss of the”Health Privilege” – Experts by Experience

By Danielle Ripley-Burgess danielleburgess

For some people, the only life they’ve ever known is full of suffering, disease, and pain. I am not one of those people. I was born a healthy baby in December 1983, and for most of my childhood, I stayed that way. I never broke a bone and I rarely got sick. I did contract […]

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Tags: cancer

July 6, 2018

A Nothing Day: Self-Care for Caregivers – Experts by Experience

By Harriet Hodgson harriethodgson1

“Today I’m going to have a Nothing Day,” I blurted to my husband. “I’m going to sit on the couch, put my feet up, read if I want to, take a nap, or stare straight ahead.” My wheelchair-bound husband turned to me and replied, “I understand.” He did understand because he has participated and watched […]

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Tags: caregivers, caregiving

June 15, 2018

The Little Voice in my Head – Escaping My Biggest Enemy – Experts by Experience

By Alisha Bridges alishabridges

She always managed to show up right before a big event in my life, “Do you really want people to see your nasty looking skin?” she’d ask me. “You are going to regret this.” One of my worst encounters with her was during a dress rehearsal—I was competing in a pageant and none of the […]

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Tags: psoriasis

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