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This article was adopted by David Epstein’s Substack Newsletter “Range Vired” and refers to “DIY Scientists, Olympians, and Mutant Genes,” written for Propublica in 2016. The story also became an episode of “This American Life.”
Jill Dopp Vills – A self-taught genetic detective and my friend, the central figure in the most interesting story I have ever reported, passed away last month at the age of 50 in Gowley, Iowa.
It hurts that Jill wasn’t living to see her book published.
Here is the paragraph from her book:
“All the benefits I made in learning more about my genetic diseases were accompanied by some kind of deception. To hold a family’s underground blood draw in 1996, a supply of noose from the hospital was a secret visit to our home. Scientists obtaining client rates for Priscilla genetic testing (client costs were half the ones that were charged to individual patients).
If I’m fooled, I’d be grateful for it. In that paragraph, Jill explains just a little effort to understand that there is a rare muscle dystrophy called Emery Dreyfus, which causes muscle wasting, and even more, he realized that he had caused a rare form of partial fat variability, and that it eliminated fat from certain parts of the body. For years, Jill was told she had neither of these and didn’t care about both.
After my first book, The Sports Gene, was published in 2013, I was talking about genetics in Good Morning America. “Oh, I thought this was God’s providence,” Jill told me later. So she sent me the email with a provocative subject line. She sent me a batch of family photos and a tied packet explaining an overview of her theory. She and Canadian Sprinter Prince Priscilla Lopes Shrep – a bronze medalist in the 100-meter hurdle at the 2008 Olympics – shared genetic mutations.
In the face of that, this seemed ridiculous. I could hardly find any more pictures of the two women. Please look at this page from the packet sent by Jill:
Puckett gave a detailed overview of why Jill thought that just looking at a photo of Priscilla, the two women shared the genetic mutation that caused the same fat waste, but because Priscilla neither had muscle waste either.
If Jill was right, scientists would study both of them and figure out how to help people with muscles like Jill get a little closer to the end of Priscilla in the human physique spectrum. Jill shared all of this with me as she didn’t know how best to contact Priscilla and wanted to promote her referral.
Jill’s hypothesis did not surprise me, to say the least. However, her presentation in Packet was very interesting and her knowledge of underlying genetics and physiology was so thorough that she felt that her ideas were auditory worthy. I contacted Priscilla. She agrees to meet Jill and after comparing her body parts in the hotel lobby, Jill convinces her to have a genetic test. In a short story, Jill turns out to be right. She and Priscilla had mutations in the same gene, although they were nearby.
The discovery led Priscilla to emergency care for a serious health condition that had previously been overlooked due to her apparent fitness. Jill and I shared this story in a 2016 episode of “This American Life.”
After that story was carried out, Jill’s genome was the subject of research as she wanted it to. Today, in Iowa labs, there is a fruit fly known as the “jill” fly. Because they are designed to carry the same mutation of her. As expected, the jilflies have severe mobility and limited mobility. However, just recently, scientists conducted genetic experiments, in which she increased the production of certain proteins in the jelly fly. Suddenly, they began to move like normal fruit fly.
The range of life included in Jill’s new book is incredible.
She first heard her child discuss her death with her mother. The insults of adolescence and young adulthood she endured began with a spontaneous fall at school, continuing with children looping fingers around her arms and legs, asking if her mother had given her.
Jill’s condition accelerated during adolescence, so the confused physical changes for teenagers were absolutely tragic. For almost a night, she lost the ability to do things she loved, including skating and riding a bike.
At one point in my early teens, the doctor ordered a photo of Jill’s posture.
“I have seen these photos before – the harshest of the greatest vulnerability of a patient, the harshest moment of the frozen moment, nature and the way the photographer directs, except for everything, it cannot manipulate or coaxialize the body. It is often said to be the window of the soul. of the medical world from the human race before them.”
In college, when Jill rushed through the sorority, she couldn’t keep up with her fellow pledges as they walked across campus. When the man following the group saw Jill being late, he creeps up and exposed him to her. “I was targeted because I was weak,” Jill wrote. “I was assuming the light-like shape of an injured gazelle. The gazelle was separated from the pack with lame legs. …The normal 18-year-old joined for safety, but I felt the shame of shame filling every cell of existence.
But what’s even more powerful about “Made My Miracle” than candid humiliation is the scenes of family, love, and hope.
Jill’s awful humor comes when she writes about dating. At one point, she used her Match.com profile to come up with an estimate that at least 1% of men are dating women with disabilities. Rather than lamenting the other 99% in typical Jill fashion, she was excited that she could go on a new date every week if she got her profile in front of enough men.
Jill eventually meets Jeremy, the man she’ll be married to. She writes about the aspects of her relationship with kindness that I often paused after the aisle just to sit for a while and think about her words. “It reminded me of the first date Jeremy had a sincere observation,” Jill wrote. “Previously, as a man, he often spent the weekends without saying a single word aloud, in contrast to the way I live my life. I was known to chat with misunderstood numbers of callers, jokes with strangers in bookstores, or chat freely with grocery check-out scribes.”
On the second month of the date, Jill and Jeremy joined the huge Iowa State Fair. Here’s how Jill remembered it:
“When Jeremy walked up and down the carnival game line, I lived overnight for ten years, clutching the carnival booty tightly in my chest and taking a totally too long to decide which way to go. I asked.
“I’m trying to find something you can play,” he said.
My eyes are filled with tears. ”
After the “This American Life” segment came into being in 2016, Jill became a bit of a celebrity among people who struggle to grasp his mysterious illness.
She has evolved into a kind of clearing house for people with undiagnosed muscle conditions seeking help. She constantly touched Pakistani country men and sent her a video of his struggle to rise from her knees following daily prayers at a local mosque. She navigated immense cultural and logistical barriers to help him get genetic testing. “She was a global figure,” her mother, Mary, recently told me, “just from her small office in Gowley, Iowa.”
Jill became so fluent in genetics that he was recognized as a scientist when he called a lab, lab supply company or pharmaceutical company. Towards the end of her life, her flow ency has allowed her to obtain experimental gene therapy that is not actually available for non-research purposes. She knew the drug was promising and potentially deadly. And with her beloved husband and college student son in mind, she hesitated. “I was no longer afraid of death,” Jill wrote in her book. “But this didn’t mean I wanted to die.
As usual, she considered others and at the time of her death she had not experienced this last experiment.
In April, Jill and Jeremy headed to Chicago to attend the wedding. Mary shared the photos with me. That’s the same Jill I started talking about in 2013. She took great care and pride in her appearance. Looking at the photos, it’s very difficult to imagine Jill less than two months after he died.
Her brother Aaron, who is suffering from the same condition, passed away in 2019. Four of the five siblings inherited the mutation, but the severity of the disease was different, but could be alleviated by other parts of the genome. In “My Miracle Manufacturing”, Jill writes a difficult decision on whether to have a child, given the 50-50 chance to pass her mutation. Her son Martin did not inherit the mutation.
Shortly before the episode “This American Life” ran, Jill was nervous and wondered if he should pause. She was worried that listeners would focus on her decision to have children and criticize her for being selfish. We talked for hours about potential consequences. Jill and I had been in touch for three years by then, and we were planning to stick together as friends no matter what the criticism was. She decided we should move on. Luckily, this response was the most overwhelmingly positive story I have ever been involved in.
Jill and I met in Chicago afterwards and we could see her giving an invited lecture. We’ve been in touch for many years. Sometimes I went for months without talking before the call exploded.
By this spring, it’s been an extraordinary long time since we last spoke. We sent an email but no phone. Mary told me that Jill recently bought a new dress that she was planning to wear when she gave a talk about her book. On a visit before the funeral, she wears a book dress.
Mary added that she caught pneumonia and didn’t recover a few weeks before Jill passed. Mary told me she had a weak voice. “I kept telling her to call you,” Mary said. “But she kept saying:
I’ve never heard from her again and I’m crestfalling, but I think her voice is very strong.
DIY Scientists, Olympians, and Mutant Genes
