"The DIY Scientist, the Olympian, and the Mutated Gene"

Unlike any story I've ever been involved in

Last month, one of the coolest stories I was ever involved in went viral(ish). 

It’s not unusual for a surprising story to spread around the interwebs, of course, except that this story was written seven years ago. 

The story’s second life may have started with a tweet by political scientist Omar Wasow, which was viewed a few million times. But the truth is, I really don’t know what breathed new internet-life into it.

And because I didn’t have a newsletter when that piece came out — and because it got possibly the best response of anything I’ve ever written — I wanted to take the opportunity of renewed interest to share it here. 

Just a quick trailer, so you can judge whether you’re interested (or, if you’re already interested, here’s the link. And here’s the This American Life podcast version.)…

An intro to the story (in a really small nutshell) 

Days after my first book, The Sports Gene, came out, I was on Good Morning America talking about it. A woman who was at home in Iowa happened to be within earshot of the TV. She overheard the segment from the next room, and got an idea.

That woman, Jill Viles, has two rare diseases: a very rare muscle-wasting disease called Emery-Dreifuss muscular dystrophy, and a ridiculously rare form of fat-wasting known as partial lipodystrophy. These conditions are so rare on their own that the prevalence of each isn’t known for certain. Emery-Dreifuss is probably at least one in a million; partial lipodystrophy is probably somewhere between one in a million and one in fifteen million. So the odds of having both by chance alone is one in way more than the number of people who have lived on Earth, ever. 

Jill had done an incredible amount of research on her conditions, and came up with a theory about what was going on with her genetic code and physiology. But she had trouble getting anyone to listen. As an example: she once did an internship in a research lab, and was told at a medical conference that what she really had was “intern syndrome” — where an intern learning about new diseases suddenly thinks they have them. 

The reason that Jill reacted to me on TV talking about genetics and sports was that she had become convinced that she shared a mutant gene with a pro athlete — and she figured I could convince the athlete to get a genetic test. 😳

I was a reporter at ProPublica at the time, and Jill snail-mailed me a packet that outlined her theory. I remember being struck by p.14. 

Here’s what I wrote about it:

“...One was of Jill, in a royal blue bikini, sitting at the beach. Her torso looks completely normal. But her arms are spindles. They almost couldn’t be skinnier, like the sticks jabbed into a snowman for arms. And her legs are so thin that her knee joint is as wide as her thigh. Those legs can’t possibly hold her, I thought.

The other picture was of Priscilla Lopes-Schliep. Priscilla is one of the best sprinters in Canadian history. At the 2008 Olympics in Beijing, she won the bronze medal in the 100-meter hurdles. It was the first Canadian Olympic medal in track and field since 1996. In 2010, Priscilla was the best 100-meter hurdler in the world.

The photo of her beside Jill is remarkable. Priscilla is in mid-stride. It’s difficult to describe just how muscular she looks. She’s like the vision of a superhero that a third-grader might draw. Oblong muscles are bursting from her thighs. Ropey veins snake along her biceps.

This is the woman Jill thought she shared a mutant gene with? I think I laughed looking at the pictures side-by-side. Somehow, from looking at pictures of Priscilla on the internet, Jill saw something that she recognized in her own, much-smaller body, and decided Priscilla shares her rare gene mutation. And since Priscilla doesn’t have muscular dystrophy, her body must have found some way ‘to go around it,’ as Jill put it, and make enormous muscles.

If she was right, Jill thought, maybe scientists could study both of them and figure out how to help people with muscles like Jill have muscles a little more toward the Priscilla 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.”

Never before, or since, has a story come to me in this way. And obviously I wouldn’t have end up writing about it if I didn’t in fact reach out to Priscilla, and she didn’t agree to get a genetic test (which took a year to arrange). 

If you’re intrigued, check out the ProPublica story. If you want it as aThis American Life podcast instead, you can listen to that here.

Jill and I became friends through the process, and I’m sure she’ll be happy to answer questions if you leave them in the comments below. So let me know below if you want an update on her life, the research, or just have a question for Jill. 

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Until next time…

David