Items Tagged ‘experts by experience’

May 18, 2018

Redefining My Life’s Purpose…in a Recliner – Experts by Experience

By Shani Weber shaniweberehlersdanlossociety

Ever since I was a young girl I knew I wanted to be an Early Childhood Special Education teacher. My self-identity was being a teacher and my purpose was teaching. My life was going as planned—until it wasn’t. Joint pain and dislocations became more frequent, I worked fewer and fewer hours, and my focus shifted […]

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Tags: Ehlers-Danlos Syndrome, experts by experience, patient advocacy


April 6, 2018

Grieving the Loss of Your Physician – Experts by Experience

By Kari Ulrich, Volunteer Mentor kariulrich

Reflecting on my health, one of the most challenging experiences I faced as a patient was losing my primary care provider. Physical and mental health are continuously challenged when you are diagnosed with a chronic disease. For me, being diagnosed with fibromuscular dysplasia (FMD) and Ehlers-Danlos Syndrome was complicated with another diagnosis—median arcuate ligament syndrome […]

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Tags: Care Team, experts by experience, Loss, Patient, Physician


March 2, 2018

Multiple Sclerosis, Illusions, and “Working Understandings” – Experts by Experience

By Gil Greenman gilgreenman

Living with a chronic illness often means confronting your denial. I lived for eight years with multiple sclerosis (MS), thinking that my brain was beyond having new lesions. This was because I was taking a powerful drug called Tysabri. All my MRIs showed no new lesions.  However, my disease did progress, and I moved from walking […]

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Tags: experts by experience, MS, patient story


February 2, 2018

Kindness at the Margins for Caregivers – Experts by Experience

By Renata Louwers renatalouwers

With age, most of us realize the value of a solid night’s sleep, good nutrition, and exercise. We come to understand that this self-care greatly impacts how we feel, function, and perceive events around us. This is exponentially true for family caregivers of a person facing a terminal illness. Life as a caregiver to a […]

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Tags: caregivers, experts by experience


January 30, 2018

Experts by Experience – What Patient Narratives Tell Us

By Kanaaz Pereira kanaazpe

The world is shaped by stories. As experts in our own lives, we all have something to share, and the pivotal role of shared experiences has been well-established in improving health outcomes. On February 2, Mayo Clinic, and health care social network Inspire will launch “Experts by Experience” – a series of articles written by […]

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Tags: experts by experience, Patient Experience, patient stories, storytelling


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