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Amid coronavirus stay-at-home order, healthy people are learning the ways of the sick
This afternoon as I stepped into the shower for, admittedly, the first time in a couple of days, I experienced a familiar flashback. It wasn’t the first time I’d not showered daily. [by Danielle Ripley-Burgess]
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COVID-19 and cystic fibrosis – living on high alert in extraordinary times
As the global COVID-19 outbreak continues to tighten its grip, people with underlying respiratory conditions such as cystic fibrosis (CF) are particularly vulnerable. Gunnar Esiason, board member and director of patient outreach at the Boomer Esiason Foundation, has lived with CF since he was two years old. He tells us what it’s like to live on high alert in extraordinary times. [by Amanda Barrell]
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Some cancer patients face delayed surgeries and scaled-back treatments as the coronavirus advances
As the coronavirus battered the West Coast, Bryce Olson faced an excruciating decision: He was supposed to travel from his home in rural Oregon to San Diego every three weeks to take part in a clinical trial for aggressive prostate cancer. But after his last trip in early March, he wondered whether he should drop out of the trial and stay home, at least for a few months. [by Laurie McGinley]
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The life-changing burden of my rare disease
I was first diagnosed with a rare autoimmune disease, Sjogren’s Syndrome, about ten years ago, after several years of medical struggles and misdiagnosis. Over the next few years, additional autoimmune disorders were added to my chart, such as rheumatoid arthritis, psoriatic arthritis, CREST Syndrome, and others. [by Jim Kuhn]
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Patient Relationships: Physicians and Payers
Over the past several years, the relationship between pharma companies and patients has garnered much of the industry's attention. [by Robin Robinson] [quote Jeff Terkowitz]
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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. [by Kanaaz Pereira]
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Changing how we talk about clinical trials
Multiple sclerosis (MS) patient Elizabeth Kinder tells us why she participated in a clinical trial and why the language needs to change.
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The Patient Experience Symposium announces partnership with Inspire
As a part of The 4th Annual Patient Experience Symposium, Inspire will be sponsoring an important session on Monday, May 11, 2020, at The Row Hotel, Boston, MA, entitled “Reimagining Patient Healthcare: A Patient’s Journey”, led by Mike Biselli, Community Builder and HealthTech Entrepreneur.
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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 other social networking tools to share information, find support, and learn more about diseases and health conditions.[by Lee Aase]
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Words matter during a heart attack
Recent research suggests that the ways in which men and women describe heart attack symptoms differently can affect diagnosis in urgent situations. Heart attack survivor and patient advocate Maggie Parke tells us her story.
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