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The Most Interesting Email I Ever Received: Remembering the Incredible Life of DIY Geneticist Jill Viles
https://www.propublica.org/article/remembering-jill-viles-diy-geneticist-muscular-dystrophy-david-espsteinDavid Epstein
In 2013, ProPublica reporter David Epstein was contacted by a woman with a wild story and a batch of photos she believed were clues to the mystery of her condition. Turns out, she was right.
Jill Dopf Viles Credit: KC McGinnis for ProPublica
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:
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:
Mary added that, a few weeks before Jill passed, she caught pneumonia and never recovered. Mary told me her voice was weak. “I kept telling her to call you,” Mary said. “But she kept saying: ‘I want my voice to be stronger. I want my voice to be stronger before I call David.’”
I’m crestfallen that I didn’t hear from her again, but I think her voice was plenty strong.
I’m crestfallen that I didn’t hear from her again, but I think her voice was plenty strong.