Undark Podcast #15: The Virus Hunters

Join our podcast host and former NYT Science Times editor David Corcoran as he discusses Undark’s latest Case Study on the worldwide effort to find lethal viruses before they can jump to humans from other species, with writer Jeffrey Marlow. Also: Seth Mnookin on the surprising success of new science magazines, and reporter Eilís O’Neill on trichotillomania, a disorder in which people pull out their own hair.

A full transcript of the podcast follows.


David Corcoran: This is Undark. We’re a magazine devoted to exploring the intersection of science and society, and we’re this podcast. Hello, again. Welcome to episode 15. I’m David Corcoran. For our cover story “The Virus Hunters,” Undark reporters have a way of traveling to unlikely places but this is definitely the most claustrophobic journey we’ve ever covered. Jeff Marlow found himself in the Democratic Republic of Congo in a bat cave. We’ll find out why in a moment. Jeff Marlow, welcome to the podcast.

Jeff Marlow: Thank you very much. Great to be speaking with you.

David Corcoran: First, let’s talk about the big subject of your piece: viruses. I know we’ve all had them, but I’m not sure we all know what they are. Can you tell us exactly what is a virus?

Jeff Marlow: Absolutely. Viruses are really biological marvels. They’re small containers essentially of genetic material, either DNA or RNA, that are encapsulated by a protein shell. They’re very simple, deceptively so, really, and very small — often 20 to about 300 nanometers across. They infect every living thing out there, and we’re really just starting to understand what they mean ecologically and in terms of human health.

David Corcoran: Now, most viruses are not dangerous, right? Some are even beneficial.

Jeff Marlow: That’s right. Most of the ones that we’ve heard of are the scary things, the Ebola, or SARS, or the plague, things like that. But viruses are everywhere and they outnumber microbes about 10 to one in most ecosystems. There are 50 million viruses in just a teaspoon of seawater. The fact they’re everywhere and we don’t constantly get sick from them means that they are not all as terrible as we think they might be. There’s also a lot of new research in terms of how some types of viruses could be helpful. In mouse guts, for example, they can help control the microbiome and influence mouse health and something very similar is probably happening in humans.

David Corcoran: Your piece, however, focuses on the scary ones and some are really formidable and you’ve used the words “chillingly impressive.” What do you mean by that?

Jeff Marlow: Viruses are just such efficient bundles of genetic material and it’s outstanding that they’re able to dispatch living beings millions of times their size. The smallest viruses have just two different genes whereas humans have 20,000. The fact that they’re so efficient at using that limited genetic resource to cause extreme harm is amazing.

My favorite example of virus metabolic efficiency is this idea of overlapping reading frames. In all other types of life, you have a gene and that produces a very specific protein. It’s like reading a book where you read a sentence and it gives you a certain meaning. But, with overlapping reading frames, if you just transition the word length or, for example, change all the spaces in that sentence you’re reading, you’ll have a whole different meaning. It’s the same text, but multiple products come out of it. This is just a great example of how efficient viruses have become.

David Corcoran: Give us an example or two of some of these really nasty viruses that have caused terrible pandemics. I’m thinking of Ebola and SARS.

Jeff Marlow: Ebola is certainly the one that’s on everyone’s mind, especially in the DRC where this work took me. Ebola, like most other pandemic types of viruses, begins through spillover events when viruses crossover from an animal host into humans. It’s these human-animal interactions that are the targets of a lot of virus hunters.

David Corcoran: Let’s talk about the global project you describe in your piece. It’s called PREDICT. How extensive is it? What are its goals and how does it work?

Jeff Marlow: PREDICT really is a global project. It’s led by a team at the University of California in Davis but it’s funded by USAID, the agency of international development. It began in 2009 and they’re in 31 different countries from Asia to Africa and South America. The goal of PREDICT is to build this global system to detect viruses that could spill over and cause a pandemic. They’re focusing on these spillover events, but in a departure from what has been done in the past. They’re really taking a ecological approach. They’re taking a step back from the hospitals and the chaos that happens when a pandemic is in full swing and thinking about how viruses interact ecologically with animals, with human communities encroaching into wild places, and it’s really this broader look at how viruses interact all around us and how they could enter the human chain that is unique to PREDICT. There are teams all around the world in these 31 countries going to specific hotspots, locations where there’s lot of interaction between animals and people and looking at what types of viruses are there and if they could be dangerous.

David Corcoran: That brings us to the bat cave we’ve talked about in the beginning. First off, tell us about the doctor you followed there. He is quite a character.

Jeff Marlow: Dr. Prime Mulembakani is his name. He’s the country coordinator in the DRC for the PREDICT project. Everyone knows him as Dr. Prime. He’s a very jovial guy and, in some ways, he’s really uniquely suited to lead this project in the DRC. He grew up between Belgium and the DRC. His father, a native of the DRC, was a highly sought after soccer coach so they move between Africa and Europe. Through this process, Prime really saw the differences between Western Europe and Central Africa and to him it was all about health. That this was the baseline of what was leading to the huge economic disparities between these two places.

His father, through his contacts in Belgium, had lined up cushy jobs for Prime once he graduated college, but he wasn’t interested. He wanted to really go work in rural locations and figure out ways to improve community health in a way that would then improve his country’s economy. Just the stories of decades of remote work and interacting with the civil war as it raged through the DRC, he has a lot of material and he should certainly be writing an autobiography if you ask me.

David Corcoran: Why did he take you to a bat cave?

Jeff Marlow: This bat cave in southwestern DRC was one of these hotspots, one of these locations where human communities are starting to really encroach upon and interact with wild animals. This one, they have a network of informants throughout the country of people who are on the lookout for either markets where wild animals are being brought in, often illegally, or just other places where humans and farming communities are getting close to wild animals. This particular bat cave in a small village called Wene is known as a guano repository, so for decades people have been going to this cave to collect guano to spread on their fields. This is an area of intense onion growth and harvesting. This was a spot where people would go into the cave, collect a bunch of guano, maybe interact with the bats and hope for the best really. The goal was to look at this bat population and see if they were harvesting some potentially dangerous viruses.

David Corcoran: Because viruses, as you said, can jump from animals to people, and bats turn out to be an unusually efficient vector.

Jeff Marlow: That’s right. Yup. Bats, whether they bite people or their droppings end up on fruit or vegetables, it’s one of the more common ways that viruses spillover into humans.

David Corcoran: You have this wonderful scene of Dr. Mulembakani in the bat cave collecting samples and the other human workers there bemused by what’s going on. Then he takes the samples back to a laboratory, and I was really struck with how meticulous these scientists are with the samples they find. Can you talk about their process and their protocols?

Jeff Marlow: Certainly. The whole objective of this project is to compare how viruses interact ecologically across the whole planet, so you need to have a standardized protocol to do this. If one person in the DRC is doing something using a certain solution at a different temperature for 30 seconds as opposed to 45 seconds, that’s going to change your results. This project, recognizing that it’s a global objective, has been very rigorous about coming up with a standardized protocol and the main thing that that starts and ends with is this cold chain, this idea of preserving all of the samples at very cold temperature so that they do not degrade.

We’re looking for RNA viruses. So RNA degrades very quickly once it’s removed from the bat. If you don’t get it cold immediately, then you’re going to be left with very compromised results, so that’s where it starts is dipping these samples in liquid nitrogen out in the field, bringing it back to the lab, doing some genetic isolation analysis to make sure you’ve got some interesting genes. If they’re deemed interesting enough, those are sent off to Germany or the United States where the genetic sequences are read, and those results are then sent back to the team in the DRC and decisions are made accordingly.

David Corcoran: The researchers that you interviewed are incredibly dedicated, but they are up against some real formidable obstacles. Let’s talk about some of them. One is just the sheer number of viruses out there. It’s a real needle in a haystack problem, isn’t it?

Jeff Marlow: It is. Just in terms of raw number of viral particles I’ve mentioned earlier, that there can be millions in a teaspoon of water, the PREDICT project actually has produced one of the first statistically valid estimates of how many viruses there are and that’s about 320,000. That’s the number of unknown viruses in mammals alone so there’s a long way to go to really categorizing all of them and understanding how they work and if they could be dangerous.

David Corcoran: Right. We don’t know which ones could make the jump from animals to humans or what might happen when they do, and you mentioned that the people who are most at risk like the workers in the bat cave you described are not necessarily all that vigilant about the dangers.

Jeff Marlow: That’s right. To me, the surprising thing was the disconnect between name recognition of things like Ebola. Everyone’s heard of that and they realize that it’s a major threat to their lives and the lives of their loved ones and yet the day-to-day activity and understanding of how viruses could jump from the very activities they’re engaging in isn’t necessarily there. I found that to be pretty interesting. It’s mostly a factor that I think we all experience. If you have not directly experienced it or if you can’t see it, it doesn’t seem like as much of a threat as it could be.

David Corcoran: Do the scientists feel like they have the resources they need to get on top of this problem?

Jeff Marlow: Not necessarily. I mean, that’s a tough question for them to answer because you make do with what you have, so they’re doing a pretty admirable job I think of making the resources stretch as far as they can and prioritizing what to really invest in. The clearest evidence of that was the idea of getting liquid nitrogen on site in Kinshasa and taking it out to the field. There is no other liquid nitrogen source for thousands of miles around and this allows for the cold chain to be preserved throughout the sampling process so there are other things like a sequencing machine. If that were on site, that would make things go faster. But something like liquid nitrogen ensures that the samples are legitimate regardless of how long it takes to get the sequences read. That’s really a strategic use of the resources they do have.

There’s also an issue of making sure that the reagents and supplies that come into the DRC are functional. One of the lab workers tested 50 different DNA extraction kits to make sure that that genetic material you’re getting out of the viruses is representative of what’s there. Of those 50 different kits she tested, only four of them actually worked so that was an enormous waste of resources that was avoided by making sure that you’re going with the kits that actually worked.

David Corcoran: Meanwhile, while they’re up against all these logistical problems, the viruses are lurking and, as you mentioned earlier, they’re quite unpredictable. They can mutate and take other forms before they jump from one species to another, so time is not exactly on our side.

Jeff Marlow: It sure doesn’t seem that way, no. Just last week, a new spillover event of Ebola has been documented. That’s in the northern DRC. This happens relatively frequently and the fact that human societies are continuing to encroach into wild animal habitats, the globalized transportation network is just getting more and more interconnected, so the numbers and the trends of human movement are really not in our favor so that adds even more urgency to this kind of work.

David Corcoran: I wanted to ask you about one other type of animal you visited and that is the bonobo. You went to a sanctuary there. What’s it like and why is it considered a hub for this type of research?

Jeff Marlow: The bonobo sanctuary is on the outskirts of Kinshasa. Kinshasa is an enormous city of about 11 million people. It’s been expanding as people from more rural areas of the DRC come to the big city in hopes of jobs and other opportunities. The sanctuary that used to be in pristine forest separated from the city is now surrounded by it, and this means that there are a lot of different ecologies that are coming together at this particular spot.

The bonobos themselves come from … Often rescued from the black market. There is a trade of getting baby bonobos for pets, and by rescuing these animals from markets around Kinshasa or elsewhere in the country, there seems to be a way to rehabilitate them and ultimately introduce them back into the wild. To mediate that process, there’s a group outside of Kinshasa at the sanctuary that takes in about two or three dozen bonobos and nurses them back to health, socializes them into communities and then hopefully reintroduces them. But, because of this ecological mashup of mosquitoes and intensive farming going around the sanctuary, there’s a lot of different microbial transfer that’s going on and this has lead to a couple of different outbreaks of viral disease.

The PREDICT team was brought in to take a look at this and ultimately solve the problem. They sent off the sequences, found that it was a type of encephalomyocarditis virus and that helped to figure out how to treat the bonobos and prevent this from happening again. In terms of why the PREDICT team is doing this, why they’re interested in bonobos, obviously they’re a very close relative of humans, and if this virus can gain a foothold in the bonobos, it suggests that it could also spillover to humans on the outskirts of this enormous city. It’s been a really valuable collaboration between these two groups.

David Corcoran: Well, speaking of humans, you’re a human. Were you worried at all when you went out on this story? What kind of precautions did you take?

Jeff Marlow: I was not particularly worried. Perhaps I should have been more so. But I think just appreciating that this is a major needle in a haystack problem is part of it. Everyone from Dr. Prime to the villagers weren’t always taking enormous care when approaching some of these areas. But anyone who directly handle the bats had to be in huge amounts of protective gear. There were multiple layers of Tyvek, and three layers of gloves, and full face shields, and that’s because once you start to handle the bat fluids, that’s where the viruses are and where they could be transmitted. As long as I was staying away from the bat fluids, which I certainly was, then there’s not necessarily that much to worry about.

David Corcoran: Well, it is intriguing and it’s an incredibly important story as well, so I want to thank you for doing it for Undark and thank you for coming onto the podcast to talk about it.

Jeff Marlow: Absolutely. Thanks so much for having me.

David Corcoran: Jeff Marlow is a post doctoral scholar in geobiology at Harvard. He’s also a science writer and the executive director of the Ad Astra Academy, a nonprofit educational program that brings the excitement of exploration to communities around the world.

Joining us as always is Seth Mnookin to talk about science in the media. Hello, Seth.

Seth Mnookin: Hey, David. How are you?

David Corcoran: I’m good. Thank you. We’re going to talk science magazines this week and of course I work for one called Undark. That’s what this podcast is, but it turns out that Undark is the tip of the iceberg.

Seth Mnookin: Yeah, it’s an interesting topic and one that I’ve been talking about a lot recently as this year’s class of my graduate students in science writing is graduating and they’re talking about outlets that are available for them for the future. I think in some ways we’re in a very interesting moment in science journalism because, in terms of staff jobs either at metro newspapers, or in magazines, or TV stations, we’ve seen an incredible shrinking of that type of position. In that way, obviously, there’s much less job security for fewer science writers than there would have been even a decade ago.

At the same time, something that we’ve seen really explode in the last five years is either online or print longform science publications, science journalism publications. Whereas when I was starting out in journalism, the likelihood of my getting a three or a four, 5,000 word piece published within a year or two being out of school were pretty minimal. Now, because of these proliferation of outlets, there’s actually much more opportunity to do that type of impact for longform work, and I think that’s available to a wider number of people. It reaches a smaller audience than a newspaper with a circulation of half a million did or does, but you do see this flowering of really, really good longform science work.

David Corcoran: How does that happen? I worked for a newspaper for most of my career. We know that newspapers are, if not imploding, at least shrinking in size and ambition. How is it that these longform outlets are arising and succeeding?

Seth Mnookin: I think there are a couple of different answers to that. One very obvious one is that they are not using traditional revenue models. Traditional revenue models being revenue based on advertising and circulation. If you look at these publications, a lot of them are funded at least in part by foundations. A lot of them are nonprofit. Some of them are tied to larger institutions or even other publications. For instance, Undark is connected to the Knight Science Journalism program at MIT. Quanta, which just had a relaunch, which is I think a phenomenal publication, gets a lot of support from the Simons Foundation. Nautilus, which we should probably talk about some more, got millions of dollars and seed money from the Templeton Foundation.

You see a slightly different model. It’s something that we saw a little bit and are continuing to see a little bit with investigative outlets like ProPublica that are set up not as a traditional journalistic institution but as a nonprofit. Instead of publishing just their own work, they partner with different places. I think what we see in this longform science world is a continuation of this exploration of different ways to produce high quality journalism.

David Corcoran: No reliance on advertising which is of course the base that has sustained the newspaper and magazine industry for most of our lives. Let’s talk about that magazine Nautilus and the Templeton Foundation which supports it. What’s the story?

Seth Mnookin: Nautilus is I think a fascinating case. It launched maybe five years ago both as a print publication and online, an absolutely gorgeous print publication with thick paper stock. They obviously put a lot of money and time and attention into design. They have single themed issues that are all focused on one concept or idea, and in their first year of eligibility, which I think was 2015, they won two national magazine awards which is really stunning. It’s the only publication ever to win two awards, National Magazine Awards, in its first year of eligibility.

Since that time, it’s been a place that I think writers have wanted to write for and have sought out. Unfortunately, it’s come out over the past couple of months that they are experiencing a pretty severe cash crunch and have not been paying their freelancers. Not only they’ve not been paying their freelancers, but simultaneous to that have been actively soliciting new work. It was something that was being talked a lot about on journalism forums and on writers forums, and then Undark actually published a piece about this talk into freelancers I think in late April.

What I think is so disturbing about that is that they continue to solicit work and, in soliciting that work, did not acknowledge on any level that there were writers who have been waiting three, four, five, six, sometimes eight months to get paid for assignments they’ve completed. Because they’re soliciting longform work, these are not assignments that a writer can whip off in an afternoon. These are things that took weeks and I’m sure in some cases months of effort.

David Corcoran: I understand that the Templeton Foundation which has been the main supporter of the magazine has been dialing back its support somewhat just in keeping with its longstanding practice, and that Nautilus is seeking new sources of funding from the American Association for the Advancement of Science. At the moment, all of that is pretty uncertain, I believe.

Seth Mnookin: Yeah. As you’ve said, that is very much keeping in the Templeton Foundation’s M.O. Back now I think in 2012, they gave it a $5 million grant for the startup phase essentially and then eventually gave it another $2.1 million, and since then I think it has given it another several million dollars. They’ve received somewhere close to $10 million from the Templeton Foundation, but they typically do not like to just continue to fund projects. They like to help projects get off the ground or continue to fund them at that same level. In the Undark story, Nautilus’s publisher said that they were very close to an agreement with what sounded like the American Association for the Advancement of Science. But, then when Undark actually spoke with AAAS, that seemed much less sure than the publisher made it seem to be. I think the future there is still a little murky. I just got my latest issue of Nautilus in the mail earlier this week. It continues to be a gorgeous, very well-written, very admirable publication in a lot of ways, but that’s clearly something they’re going to need to work out.

David Corcoran: Let’s talk about a happier story. Quanta Magazine, what is that?

Seth Mnookin: Quanta is a publication that is funded by the Simons Foundation. The Simons Foundation is a really, really interesting foundation run out of New York. They’ve always funded a lot of science. They funded a lot of research into autism specifically, and they’ve moved over more in the last five or so years into journalism and writing that is going to appeal to a general audience. With the investment that they have made in Quanta, which started around the same time that Nautilus did, that looks to be a pretty impressive outlet and impressive place for science writing to be just based on what they’re doing there and who they are hiring and have hired, including John Rennie, who is the former editor in chief of Scientific American — a great guy, a great writer, a great editor and he’s going to be overseeing Quanta’s biology coverage. I’m incredibly proud to say that they hired Kevin Hartnett who was an assistant of mine on my last book. He’s actually writing about math full time for Quanta, so it’s pretty cool what they’re doing.

What I also think is interesting about Quanta is, unlike Nautilus, they are going to exist online and the cost that that saves are enormous. Quanta, the Simons Foundation is making a significant investment but, at the same time, is being a little bit more directed in how they want to get this out there.

David Corcoran: We’ve talked about Nautilus. We’ve talked about Quanta and of course this is the Undark podcast, but there are other science magazines as well that are springing up.

Seth Mnookin: Yeah, there are a whole bunch, a combination of print and online, mostly trending towards online but places that are also doing really impressive work. You have Mosaic Science which is published by the Wellcome Trust. You have Aeon. You have Hakai. You can go to any of these sites and read three, four, 5,000 word pieces that are as good as anything you’re going to read today, and I think that’s an incredible flowering of really topnotch work, and that’s one of the reasons why I hope Nautilus is able to work this out because I think the more of these outlets we have, the better it is not only for journalists, but also for people interested in learning, and reading, and understanding the world we live in.

David Corcoran: Sounds like when nobody was looking and the newspaper and magazine industries were collapsing, we suddenly entered a golden age of science journalism.

Seth Mnookin: Yeah. Well, we’ll need to see in five more years how many of these are still up and running. But, certainly right now I think there are a lot of really incredible opportunities.

David Corcoran: Seth Mnookin is our media and science commentator. He’s the author of a number of books about science and journalism including “The Panic Virus,” and he’s director of the graduate program in science writing here at MIT. Seth, as always, thanks.

Seth Mnookin: Yup. Thank you so much.

David Corcoran: Imagine if you couldn’t stop pulling out your own hair. It’s a problem that’s a lot more common than you might think. Two out of every hundred people have what’s called trichotillomania or tric. That means they compulsively pull out their eyebrows or lashes or the hair on their head. One of those people is 16-year-old Geneva Myhrvold. She goes by Gigi. She and her mom Linda sat down with the producer Eilís O’Neill in Seattle to tell their story. It all started six and a half years ago when Gigi was nine years old and traveling far far away from the Pacific Northwest.

Gigi Myhrvold: We were in Africa and we were in this tent on a stilted walkway. In the morning, I woke up and I felt something biting me. There was a lot of red ants.

Linda Myhrvold: It looked like she had a red blanket over her and it was a sea of ants.

Gigi Myhrvold: I was running around and stomping on ants and tearing off of my pajamas. They were all over me. I remember there’s this full length mirror and I just remember I went up to it and I saw my eyelashes first and so I just pulled those. I was like, “Oh, that felt relieving.”

At the end of the trip, I almost had all of them grown back actually, and so we thought it was just like a one-time thing. It’s just a weird thing that I did. But, I just was tired and angry and wanted to go home, so I went in the bathroom. I would just go in there for 10 minutes and just pull out everything. On the plane ride home that happened and it happened more when I got home.

Linda Myhrvold: You might look over and she might be studying. She’ll look like she’s more of in a dreamy phase and you’ll see the hands come up and just very slowly pull out and then come back and then maybe find another.

Gigi Myhrvold: A lot of people, the first question they ask is, “Does it hurt?” It doesn’t. It actually feels good. It feels like you’re relieving stress or something like that. It has a calming effect.

Linda Myhrvold: I made it worse definitely by thinking that she could control it more than she could. We went through the gamut like, “Okay. Let’s just not do it.” Or, “Why don’t you try this?” Or, to getting mad at her like, “Are you kidding me? Do you not ever want to have any eyelashes? Is that what you want?”

Gigi Myhrvold: I didn’t really know why my mom was so concerned about it and I didn’t think that it was that big of a deal. I didn’t really want to stop.

Linda Myhrvold: We went to the dermatologist. We went to a therapist. They’re like, “Is it alopecia? Is her hair is just falling out.” I’m like, “No, it’s not falling out on its own.”

Gigi Myhrvold: It just felt like a very scary thing because even the adults who we went to, like the pediatrician and the therapist, they didn’t really know what it was.

How I figured out was I bought a teen magazine on the way to an airport or something. On the front of it, it said, “Real life horror story: I couldn’t stop pulling out my hair.” I was like, “Hmm. That sounds familiar.” I flipped to it and there was this girl talking all about tric and I didn’t know what it was but I looked it up and we finally figured out what I was dealing with. I put that girl’s article on my wall because it was like “This is the only person I’ve heard who has it.”

Linda Myhrvold: We went to somebody who specifically works on changing behaviors. She had specific things she wanted me to ask Geneva and then Geneva didn’t want to answer them.

Gigi Myhrvold: I would lie compulsively for as long as she would ask me those questions. Then, in middle school, I think it was 6th grade, I started pulling my head. What I would do is I would wrap the strand of hair around my fingers until I reached the scalp and then I’d just ripped it really hard, really fast. Then I’d just drop it on the floor beside my desk, and then I’d look down and see a lot of dark blonde rings on the floor that were like the thickness of a dime or something like that.

I was in 8th grade history class. Halfway into the period I realized that some people were taking notice what I was doing. Then I gathered up all the rings from the floor of my hair and I walked over the trashcan on the other side of the room and everyone looked over at me. I sat back down and I didn’t make eye contact with anyone.

Linda Myhrvold: I think middle school is a really difficult time for a lot of teens whether, they’re showing it or not, and I think having something that’s fairly definitive like you’re not having any brows or lashes is right there on your face.

Gigi Myhrvold: A lot of people would just look at me and they did a double take. God, I got really, really low self-esteem and I feel very bad about myself.

Linda Myhrvold: The other thing is you pull out an eyelash in two seconds, one second, whatever it takes to pull out an eyelash. It takes 16 weeks to grow an eyelash and an eyebrow back from start to finish. That’s why the bracelets were a fun new development.

Gigi Myhrvold: The bracelets are a leather strap. You fasten it like a watch. On the top, it looks like a Fitbit and basically what it is is you download an app on your phone called Slightly Robot and you connect the bracelets to it so you basically do the motion that you do when you’re pulling and I press calibrate. You put your hand up to your face and it’ll start buzzing. The bracelets actually help you recognize what you’re doing and know that it’s time to stop doing that.

When I first started wearing them, which was this year, people would be like, “Oh, my gosh. What’s that? Is that a watch?” Then they’d ask if it was a Fitbit and then I’d eventually be like, “Okay. Well, now I have to tell you.” I become a lot more open about it and I think that helps me accept it more myself.

Linda Myhrvold: The bracelet has changed our relationship because it’s taken a lot of tension out of, “Do I point it out right now? She’s having a moment.”

Gigi Myhrvold: The only time I would say the bracelets were not helpful was I’m consciously thinking I don’t care what the bracelet thinks right now. I’m going to pull my hair because it feels good. I don’t think there’s a real way to stop that other than myself just stopping. I don’t have to blow this away completely. I just have to learn to control it. I don’t want to let it control how I’m feeling or how I feel about myself. I want to be able to feel confident myself without having to worry about what other people think about the way I look. That’s my goal right now.

Eilís O’Neill: What do you hope people learn from your story?

Gigi Myhrvold: The hardest thing for me was feeling that I was the only one who struggle with this. This disorder is a lot of things but it is not one that you have to be alone in. It’s not a struggle that you have to face with nobody else there because there are people who know what you’re going through and there are people who will be on your side.

David Corcoran: That’s all for this episode of Undark, a project of the Knight Science Journalism program at MIT. Our show is produced by Katie Hiler. We’ll be back next month with more news and interviews from the intersection of science and society. Until then, I’m David Corcoran for Undark.

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