After a Diagnosis, Patients Are Finding Solace—and Empowerment—in a Sensitive Corner of Social Media

After a Diagnosis, Patients Are Finding Solace—and Empowerment—in a Sensitive Corner of Social Media

Katherine Leon and her dog enjoy nice weather in their backyard in Virginia. Leon went from feeling like she was "wandering in the woods" with doctors who hadn't experienced her spontaneous coronary artery dissection, or SCAD, to starting the world's largest registry for research on the condition.

Photo by Evan Leon

When Kimberly Richardson of Chicago underwent chemotherapy in 2013 for ovarian cancer, her hip began to hurt. Her doctor assigned six months of physical therapy, but the pain persisted.

She took the mystery to Facebook, where she got 200 comments from cancer survivors all pointing to the same solution: Claritin. Two days after starting the antihistamine, her hip felt fine. Claritin, it turns out, reduces bone marrow swelling, a side effect of a stimulant given after chemo.

Richardson isn't alone in using social media for health. Thirty-six percent of adults with chronic diseases have benefited from health advice on the internet, or know others who have. The trend has likely accelerated during COVID-19. "With increases in anxiety and loneliness, patients find comfort in peer support," said Chris Renfro-Wallace, the chief operating officer of PatientsLikeMe, a popular online community.

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Matt Fuchs
Matt Fuchs is the host of the Making Sense of Science podcast and served previously as the editor-in-chief of Leaps.org. He writes as a contributor to the Washington Post, and his articles have also appeared in the New York Times, WIRED, Nautilus Magazine, Fortune Magazine and TIME Magazine. Follow him @fuchswriter.
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Sarah Watts

Sarah Watts is a health and science writer based in Chicago.

natural killer cell
NIAID, CC BY 2.0 <https://creativecommons.org/licenses/by/2.0>, via Wikimedia Commons

On today’s episode of Making Sense of Science, I’m honored to be joined by Dr. Paul Song, a physician, oncologist, progressive activist and biotech chief medical officer. Through his company, NKGen Biotech, Dr. Song is leveraging the power of patients’ own immune systems by supercharging the body’s natural killer cells to make new treatments for Alzheimer’s and cancer.

Whereas other treatments for Alzheimer’s focus directly on reducing the build-up of proteins in the brain such as amyloid and tau in patients will mild cognitive impairment, NKGen is seeking to help patients that much of the rest of the medical community has written off as hopeless cases, those with late stage Alzheimer’s. And in small studies, NKGen has shown remarkable results, even improvement in the symptoms of people with these very progressed forms of Alzheimer’s, above and beyond slowing down the disease.

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Matt Fuchs
Matt Fuchs is the host of the Making Sense of Science podcast and served previously as the editor-in-chief of Leaps.org. He writes as a contributor to the Washington Post, and his articles have also appeared in the New York Times, WIRED, Nautilus Magazine, Fortune Magazine and TIME Magazine. Follow him @fuchswriter.