Results for search term "experts by experience".

EDITORIAL

A Good Night's Sleep - Experts by Experience

I was diagnosed with lymphedema last year, while undergoing treatment for pain and swelling issues with my right ankle, knee, and leg. After going over the examination and test results, the doctor asked me about my sleep quality and habits. I didn’t think much about it at the time—I was… [...]

EDITORIAL

Hope: A Strategy for Managing Chronic Disease--Experts by Experience

Time is one of the most priceless gifts we all have, but which can be robbed in an instant from those of us with chronic illness and disease. From diagnosis and prognosis, to the time it takes to cope with symptoms, we are instantly required to shift our thinking to… [...]

EDITORIAL

Accidental Path to a Cancer Cure - Experts by Experience

Incontinence was a major problem for me 15 years ago. Guiding my cousins around the National Mall in Washington D.C. one day, I had to find a restroom for urinary relief several times. Later, we remembered that my father had developed incontinence from benign prostatic hypertrophy or BPH—overgrowth of the… [...]

EDITORIAL

Don't Forget Us! Young Adults with Invisible Illness - Experts by Experience

My brain swirled as I waited on the surgery table for my colectomy, the removal of the entire large intestine. I told the anesthesiologist I was ready for him to start the sedation, knowing this is an irreversible surgery, but also knowing I would come out with a new life.… [...]

EDITORIAL

Experts By Experience Free E-Book Released

If You Were in my Shoes...Stories That Teach The online patient community, Mayo Clinic Connect, together with health care social network Inspire, have compiled in a free e-book a collection of patient stories — words of wisdom — published in the Experts by Experience series on the Mayo Clinic Social… [...]

EDITORIAL

Stopped in My Tracks - Experts by Experience

Almost five years ago, I was diagnosed with post-traumatic stress disorder–PTSD. In hindsight, my symptoms began years earlier, after my second diagnosis of lung cancer. I learned that cancer was a huge trigger for my PTSD, and it explained my depression and anxiety, the withdrawal and constant irritability. I was… [...]

EDITORIAL

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 recognize it and… [...]

EDITORIAL

Stories: The Journey to Utopia - Experts by Experience

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… [...]

EDITORIAL

Living Life on Pause - Experts by Experience

March 2016–a seemingly ordinary day, but I remember feeling that something wasn’t quite right. Throughout the day I’d been nursing a headache, with no sign of relief. That evening, standing in my kitchen, I felt an explosion of pain inside my skull. The feeling was indescribable! I realized I needed… [...]

EDITORIAL

Experts by Experience - What Patient Narratives Tell Us

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… [...]

EDITORIAL

One of a Kind-When Your Child has a Condition with No Name - Experts by Experience

Today, I’m spending the day with my daughter, Tess. She’s nine years old. Since Tess’s birth, my wife and I have drastically redefined our lives. We have simplified our working lives in order to make room for medical appointments, sessions with specialists, and educational meetings. We’ve connected with a group… [...]

EDITORIAL

How Cancer Opened New Doors for Me - Experts by Experience

At the age of 42, with my wife who was not quite 40 yet, we had become used to the questions that couples without children get from family, friends, and strangers. We were at peace and confident in our decision to remain childless. Of course, without a prostate, that decision… [...]

EDITORIAL

An Ear for the Unsaid: The Importance of Hearing What is Not Said by Patients

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… [...]

EDITORIAL

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 on patient experience.… [...]

EDITORIAL

A Call to Courage - Experts by Experience

“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… [...]

EDITORIAL

Shifting the "Privacy Calculus" for the Patients Online

For many people, sharing about their health online overrides conventional concerns about privacy. Each person weighs the benefits and risks arriving at their own “privacy calculus”. Patients and caregivers who share about their health in online communities told me that they agree with Alan Westin’s concept of privacy: The right… [...]

EDITORIAL

Threads of Connection - Experts by Experience

Everything we do creates energetic, invisible links joining us together–threads of connection. Be it a smile, a gentle touch, or a grumpy mood, our feelings affect those around us.  And whether you’re a medical professional, service provider, patient, or caregiver, you have the power to transform any health care encounter… [...]

EDITORIAL

Message in a Bottle? What Lost Rubber Ducks in the Ocean Can Teach Us About Patient Care

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 patient experience.… [...]