by David Epstein

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This article was adapted from David Epstein’s Substack newsletter, “Range Widely,” and references the story “The DIY Scientist, the Olympian, and the Mutated Gene” that he wrote for ProPublica in 2016. That story also became an episode of “This American Life.”

Jill Dopf Viles — self-taught genetic detective, the central figure in the most interesting story I’ve ever reported and my friend — passed away last month in Gowrie, Iowa, at 50.

I’m heartbroken that Jill did not live to see the publication of her book — “Manufacturing My Miracle: One Woman’s Quest to Create Her Personalized Gene Therapy — which came out last week. I know how much she treasured the fact that she would soon be able to call herself “author.”

Here is a paragraph from her book:

“Every gain I’d made in learning more about my genetic disease had involved some type of deception — to do my family’s underground blood draw in 1996 required that phlebotomy supplies be lifted from a hospital and a nurse secretly visit our home; gaining journalist David Epstein’s interest began with a wild exaggeration in my email subject line: ‘Woman with muscular dystrophy, Olympic Medalist—same mutation’; and I’d adopted the lexicon of a research scientist to gain a client rate for Priscilla’s genetic testing (the cost for clients was half what was charged to individual patients).”

If I was deceived, I’m grateful for it. In that paragraph, Jill is describing just a bit of the effort that went into figuring out that she had a rare form of muscular dystrophy called Emery-Dreifuss, which causes muscle wasting, and also an even rarer form of partial lipodystrophy, which causes fat to vanish from certain parts of the body. Jill had been told for years that she didn’t have either of these, never mind both.

After my first book, “The Sports Gene,” came out in 2013, I was on “Good Morning America” talking about genetics, and Jill happened to be within earshot of her TV. “I thought, oh, this is divine providence,” Jill later told me. So she sent me that email with the provocative subject line. She followed up by sending me a batch of family photos and a bound packet outlining her theory: that she and Canadian sprinter Priscilla Lopes-Schliep — bronze medalist in the 100-meter hurdles at the 2008 Olympics — shared a genetic mutation.

On the face of it, this seemed ridiculous. One could hardly find a picture of two more different women. Take a look at this page from the packet Jill sent me:

The packet outlined in granular detail why Jill thought, just from looking at pictures of Priscilla, that the two women shared a genetic mutation that caused the same fat wasting, but because Priscilla didn’t also have muscle wasting — quite the contrary — her body had........

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