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.
New implants let paraplegics surf the web and play computer games

Rodney Gorham, an Australian living with ALS, has reconnected with the world, thanks to a brain-machine interface called the Stentrode.

Rodeny Dekker

When I greeted Rodney Gorham, age 63, in an online chat session, he replied within seconds: “My pleasure.”

“Are you moving parts of your body as you type?” I asked.

This time, his response came about five minutes later: “I position the cursor with the eye tracking and select the same with moving my ankles.” Gorham, a former sales representative from Melbourne, Australia, living with amyotrophic lateral sclerosis, or ALS, a rare form of Lou Gehrig’s disease that impairs the brain’s nerve cells and the spinal cord, limiting the ability to move. ALS essentially “locks” a person inside their own body. Gorham is conversing with me by typing with his mind only–no fingers in between his brain and his computer.

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Stav Dimitropoulos
Stav Dimitropoulos's features have appeared in major outlets such as the BBC, National Geographic, Scientific American, Nature, Popular Mechanics, Science, Runner’s World, and more. Follow her on Facebook or Twitter @TheyCallMeStav.
Leading XPRIZE Healthspan and Beating Negativity with Dr. Peter Diamandis

XPRIZE founder and chairman Peter Diamandis launches XPRIZE Healthspan at an event on November 29.

Hevolution Foundation

A new competition by the XPRIZE Foundation is offering $101 million to researchers who discover therapies that give a boost to people aged 65-80 so their bodies perform more like when they were middle-aged.

For today’s podcast episode, I talked with Dr. Peter Diamandis, XPRIZE’s founder and executive chairman. Under Peter’s leadership, XPRIZE has launched 27 previous competitions with over $300 million in prize purses. The latest contest aims to enhance healthspan, or the period of life when older people can play with their grandkids without any restriction, disability or disease. Such breakthroughs could help prevent chronic diseases that are closely linked to aging. These illnesses are costly to manage and threaten to overwhelm the healthcare system, as the number of Americans over age 65 is rising fast.

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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.