Patient Involvement

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


June 1, 2018

The Choice and Challenge of Being “Good Enough”- A Caregiving Story – Experts by Experience

By Scott, Volunteer Mentor IndianaScott

Caregiving arrived without fanfare on her birthday–a June day in 2002–when my wife was diagnosed with brain cancer. It was in one of the small consultation rooms that I first heard the word ‘caregiver’ as my wife lay in a coma in the ICU, while I vacillated between being brave and despondent. There was no […]

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Tags: caregivers, patient advocacy


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


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