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by David Epstein ProPublica is a nonprofit newsroom that investigates abuses of power. Sign up to receive our biggest stories as soon as they’re published. 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 found some way to “go around” muscular dystrophy. If Jill was right, she thought, perhaps scientists could study both of them and figure out how to help people with muscles like Jill’s develop muscles a little closer to Priscilla’s end of the human physique spectrum. Jill was sharing all this with me because she wasn’t sure how best to contact Priscilla and hoped I would facilitate an introduction. Jill’s hypothesis struck me as unlikely, to say the least. But her presentation in the packet was so interesting, and her knowledge of the underlying genetics and physiology so thorough, that I felt her idea deserved a hearing. I reached out to Priscilla; she agreed to meet Jill, and after comparing body parts in a hotel lobby, Jill convinced her to get a genetic test. Long story short, Jill turned out to be right. She and Priscilla had a mutation in the same gene, albeit at neighboring locations. The discovery led Priscilla to get urgent care for a serious health condition that had previously been overlooked because of her obvious fitness. Jill and I shared this story in an episode of “This American Life” in 2016 — which was rerun last week in her honor. After that story ran, Jill’s genome became the subject of research, exactly as she’d hoped. Today, in a lab in Iowa, there are fruit flies known as “Jill” flies, because they have been engineered to carry her same mutation. As expected, Jill flies have severely limited mobility. But just recently, a scientist conducted a genetic experiment in which she increased the production of a particular protein in the Jill flies. Suddenly, they began to move like normal fruit flies. The breadth of life contained in Jill’s new book is incredible. She was a child the first time she heard a doctor discussing her own death with her mother. The indignities of adolescence and young adulthood that she endured were legion, starting with spontaneous falls in school, followed by kids looping their fingers around her arms and legs and asking if her mother fed her. Jill’s condition accelerated with puberty, so the bodily changes that are confusing for any teenager were absolutely harrowing for her. Almost overnight she lost the ability to do things she loved, like skate or ride a bike. At one point in her early teen years, a doctor ordered pictures of Jill’s posture, which forced her into a strange and humiliating photo session that hadn’t been properly explained beforehand: “I had seen these photos before — a stark, frozen moment of a patient’s greatest vulnerability, the body positioned in a way nature and the photographer dictate, all except for the eyes. The eyes cannot be manipulated or coaxed. It is often said that the eyes are the windows to the soul. Maybe that is why black bars are printed over the eyes of the patient. Perhaps this is done to protect the patient’s anonymity, but I wonder if it isn’t really done to shield the peering eyes