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Virtual Connection in a Time of Social Distance
Jonathan Sommers remembers ​many nights spent alone in a hospital room after he had numerous complications from his surgery for testicular cancer in 2012. The coronavirus pandemic brings many of the same fears to the surface for the 36-year-old writer, filmmaker and producer who lives in Santa Monica, California.​​ [by Marci A. Landsmann]
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Living with chronic pain is hell. Social media makes it a little less grim
Once again, it’s the middle of the night, and I’ve been up obsessively googling a new symptom. Every so often I glance at the head on the pillow next to mine, checking to make sure my partner isn’t waking up from the glow of my phone or the shuffle of elbows on linen. [by: Cheyenne McDonald]
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Coping with disease and disability in the time of coronavirus
Sassy Outwater-Wright has fought off cancer three times in the last 33 years, losing most of her eyesight to a rare form of the disease at the age of three. And now, at age 37, she's fighting a fourth cancer -- this time in her brain. [by Ryan Prior]
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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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