Results for search term "experts by experience".

EDITORIAL

Experts by Experience: Second Free eBook Released

The online patient community, Mayo Clinic Connect, together with health care social network Inspire, have released the second free ebook––Experts by Experience 2019: Patient Stories that Teach––a compendium of patient and caregiver stories published in 2019 on the Mayo Clinic Social Media Network.  The goal of this eBook is twofold:… [...]

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Experts by Experience: Second Free eBook Released

The online patient community, Mayo Clinic Connect, together with health care social network Inspire, have released the second free ebook––Experts by Experience 2019: Patient Stories that Teach––a compendium of patient and caregiver stories published in 2019 on the Mayo Clinic Social Media Network. 

The goal of this eBook

[...]

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My Leaky Life: Learning to Live with Chronic CSF Leaks - Experts by Experience

My dogs and I prepare to head out for a walk in the forest. They’re excited–which makes it challenging for me to put their visibility vests on them. My anger instantly swells out of proportion; I growl, move abruptly. The instant I’m short-tempered with them, I simultaneously [...]

EDITORIAL

An Invisible Illness - Experts by Experience

First Encounter I was 48 years old when I first encountered serious illness – I was diagnosed with breast cancer. It came as surprise since no one in my family had breast cancer. I needed a mastectomy and underwent six months of chemotherapy – the toughest 6 months in my… [...]

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Narrative in Health Care: Curiosity, Context, Collaboration

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 [...]

EDITORIAL

From Empowering to Empowered - Experts by Experience

My story begins at a time when there was little information about celiac disease, and when going gluten-free was a trend or a lifestyle choice. As leader of the Mayo Clinic media relations team 15 years ago, I became aware of how patients were increasingly using blogs, discussion boards, and… [...]

EDITORIAL

Knowledge = Power = Action - Experts by Experience

In 2001, at the age of three, my primary focus in life was watching Powerpuff Girls–and keeping my one-year old brother from drooling on my collection of stuffed animals. Not surprisingly, I didn’t notice when my dad started acting strange. Even my mom was unconcerned at first–his personality changes seemed… [...]

EDITORIAL

Don't Let These 3 Common Fears Stop You from Creating a Vibrant Patient Community

Colleen Young will present "How Mayo Clinic's Patient Online Community Changes Health Care and Advances Science" at the Mayo Clinic Social Media Network 2018 Annual Conference. To learn more from Colleen and other expert speakers, please join us! Have you considered an online patient community but have hesitated because concerns about misinformation, misbehavior, and… [...]

EDITORIAL

Having the Same Goal: I Chose Life - Experts by Experience

January 2014–After three years of being treated for pneumonia, at age 35, with five children and an insignificant medical history, I learned that I had a weird-named disease–scleroderma, which had no cure. I also learned that I would need a double lung transplant.  Fast-forward to September 2016–I was admitted to… [...]

EDITORIAL

Zero Harm: Why it Matters to Me - Experts by Experience

“Dad was in ER today,” my mother-in-law told me in her native Korean. A week ago, while at work, Dad (a.k.a. my father-in-law) had bumped his head hard. It was only when he had to sit down because he felt a sudden coldness on his head, that he drove –… [...]

EDITORIAL

Finding Gems in the Rubble - Experts by Experience

It was two weeks before Christmas and just days before both our birthdays. We had been married only four months, and it would be our very first birthday and holiday celebration together. I had been thinking about my life as a wife – married life – with children, a yard,… [...]

EDITORIAL

Dear Doctor: Hope and Options - Experts by Experience

I recently spoke to 165 first-year medical school students at the University of Pittsburgh. It was their first day in the class, “Introduction to Being a Physician,” which is dedicated to the doctor/patient relationship, and focuses on humanism in medicine. The preceptor told me that previous students, who are now… [...]

EDITORIAL

Infusing Change - Experts by Experience

What if I told you the hardest thing about living with a genetic bleeding disorder, like hemophilia, isn’t the joint damage, the surgeries or any of the other physical hurdles? What if I told you, what “hurts” the most is going through a lifetime worth of struggles, disappointments, obstacles, and… [...]

EDITORIAL

Empathetic Doctors Make Empowered Patients - Experts by Experience

“So, tell me what’s been going on, Chris.” I watched intently as my neurologist – who I had only met thirty seconds before – settled into his chair in the exam room. Upbeat and cheerful, he had a smile on his face, which is just what I needed at that… [...]

EDITORIAL

When the Fearful become Fearless - Experts by Experience

The drip-drip-dripping of the sink in the radiology room echoed loudly in my brain as I waited for the pathologist. I just had a biopsy done for two spots on my neck—one suspected to be cancerous. “A nodule,” my primary care physician had previously explained at my annual physical. The… [...]

EDITORIAL

Hope for the Best, and Plan for the Worst--Experts by Experience

Life, as I knew it, was crashing down. I was sitting with my wife in the oncologist’s office and had just been diagnosed with stage 4 pancreatic cancer. But, I was about to experience some of the most optimistic and hopeful words I had ever heard. My doctor could have… [...]

EDITORIAL

If Remission is the Goal, Why Do I Still Feel Bad? Experts by Experience

Photo Credit: Wisdo Everyone always talks about being sick. My life took an unexpected turn after I was diagnosed with inflammatory bowel disease (IBD). I was lost, trying to navigate the nature of this new disease, this new identity, in a new college where no one seemed to understand. So,… [...]