Culture

New book shines light on Stanford University scientist working to save son from brutal disease


Every author that commits to writing a book knows they are also committing to a certain degree of isolation. It is part of why Tracie White—an award winning journalist with more than 30 years of experience under her belt—was apprehensive when an agent approached her with the idea in 2017.

Tracie White (Margarita Gallardo — Contributed) 

“I get lonely sitting at a desk for 10 hours a day,” she said, laughing softly during a recent phone interview.

But there was a quiet determination in her voice. White knew the isolation required to write her first book from her home in Aptos paled in comparison to the isolation experienced on a daily basis by the person for whom the book was written. And she was not going to let him down.

That person is Whitney Dafoe and the book is called “The Puzzle Solver: A Scientist’s Desperate Quest to Cure the Illness that Stole his Son.” It was released in January by Hachette Book Group.

It tells the story of Dafoe’s father, Ronald Davis, PhD—the “scientist” referenced in the title. Davis, who coauthored the book alongside White, is a world renowned geneticist and head of Stanford’s Genome Technology Center. Despite a pioneering and illustrious career in genomics, Davis, 79, changed the course of his research in 2013 to study a little known disease relentlessly afflicting his son—Myalgic Encephalomyelitis/Chronic Fatigue Syndrome or ME/CFS.

ME/CFS has a broad and devastating set of symptoms—loss of physical energy, brain fog, difficulty sleeping, body aches, sensitivity to sound, light, and touch, to name a few. The varied symptoms often lead to a misdiagnosis and patients are second guessed, resulting in a painful gauntlet of confusion, frustration and physical exertion that often makes the illness worse.

White worked as a reporter for the Sentinel for more than a decade and is currently a Science Writer for the Stanford School of Medicine, where she has been for more than 15 years. She originally published “The Puzzle Solver” as an article in 2016, but when an agent approached her with an opportunity to adapt it into a full-length book, she felt the need to go deeper.

“My goal as a writer has always been to tell compelling stories,” she wrote in an email. “I think tragic stories just naturally fall into that category because they are dramatic. But I’m also interested in writing stories that can make a difference, that can fix something that is broken.”

The story of Whitney Dafoe and the family that loves him so deeply is the embodiment of this aspiration—tragic, profoundly moving, and truly has the opportunity to make a difference on a massive scale. A report by the Institute of Medicine estimates that 836,000 to 2 million people suffer from ME/CFS in the United States alone. This number may soon expand significantly, as many of the COVID-19 “long-hauler” symptoms align closely with ME/CFS.

Dafoe, 37, has an exceptionally severe case of ME/CFS. He began experiencing symptoms in his early 20s while traveling the world, crafting his skills as a photographer, and dedicating himself …read more

Source:: The Mercury News – Entertainment

      

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