Join journalist, author, and the director of MIT’s Graduate Program in Science Writing Seth Mnookin as he chats with science writer Susan D’Agostino about her near-death experience with the superbug Clostridium difficile, or C. diff. Also in this episode: host Kasha Patel examines a growing number of — and growing support for — citizen science projects, and reporter Kaitlyn Schwalje looks at the humanistic approach to educating young doctors, and what their experiences with human cadavers can teach them about balancing empathy and detachment.
Kasha Patel: Hey, Undark listeners. It’s your host Kasha Patel. You may remember a few episodes ago, I helped out with a research project where I drove around Washington D.C. in my car with a temperature sensor. The data collected told researchers that shady parts of D.C. were 17 degrees cooler than areas of open parking lots and concrete. This project could inform city planning, which is cool because I helped gather this information!
And more and more of these projects are popping up. These are projects that use the help of people who aren’t scientists in the traditional, academic sense.
Now, citizen science projects aren’t new. They’ve actually been around for at least 100 years. You probably did one in school or your kids are doing one now. When I was little, we’d measure snowfall in our yard with a ruler. But we were kids and still learning how to read rulers so I wouldn’t bet my life that my measurements were 100 percent correct. And that’s probably why citizen projects sometimes have a reputation of being more about education or outreach than hard data. Don’t get me wrong, they do help with outreach. Studies have shown that citizen science can engage the public and support learning in STEM fields.
But it’s also becoming a legitimate way to do some actual science. Yes, technological advances are making it easier for people to participate, but it’s also scientists, federal agencies, and the public showing a renewed interest in this field.
Liz MacDonald: Earlier this year, our team published a new paper with citizen scientists and other scientists in our field in which we revealed there is a new feature in the night sky that we call Steve. We didn’t know that Steve was out there.
Kasha Patel: That’s Liz MacDonald, a space weather scientist at NASA’s Goddard Space Flight Center. She leads a citizen science project called Aurorasaurus that collects reports of auroras all over the world. I worked with her a few years back and even though I’m not officially involved in the project anymore, I immediately thought of her project as a great example of what happens when scientists team up with citizen scientists — you can learn something completely new.
Liz MacDonald: This feature, which looks like kind of a purple ribbon going east-west across the sky, was seen by the citizen scientists and amateur aurora photographers who are really amazing aurora photographers. And it’s been seen by them for a number of years.
Kasha Patel: Basically, when some aurora photographers in Canada showed some of their pictures to Liz and her colleagues, no one had any idea what this horizontal purple streak in the sky was. And just to provide some kind of label for the mystery, one of the citizen scientists named it Steve, a reference from a popular children’s movie he liked. Liz and her colleagues asked aurora enthusiasts and citizen scientists to keep an eye out for Steve so the team could learn more. Then, one day, luck struck.
Liz MacDonald: Some of our satellite observations also crossed this east-west feature and it is this really strong flow in the upper atmosphere called the subauroral ion drift. But what we never knew, and what is the new discovery is that it has this visual component that people can actually document and tell us more about because its mostly this little purple ribbon, but sometimes there are these green features along with it that are really wild crazy plasma physics that we don’t understand yet so we’re looking for video and working with the public to learn more about it.
Kasha Patel: And how cool is that? Liz and her colleagues learned that this feature they already knew about for a long time — this subauroral ion drift — actually has a visual feature that might be born out of some wild space physics. And now that they know more about the lights, the researchers gave it a more accurate name: Strong Thermal Emission Velocity Enhancement, which can be shortened to…you guessed it, Steve.
Liz MacDonald: Many people have different ideas in their mind when they hear the words “citizen science” including scientists who don’t get what that is for them or for their field. When you can really show results to scientists that we never would have found otherwise, people get really excited about it.
Kasha Patel: And people are getting so excited about this field. In the past 5 years, the field is gaining support from some large players, like the U.S. government. The government created the Crowdsourcing and Citizen Science Act of 2016, which is focused on promoting citizen science activities across different federal agencies, which they post at citizenscience.gov or on Twitter at @FedCitSci.
The field is also getting more dedicated resources. They have their own peer-reviewed open access journal called Citizen Science: Theory and Practice. Three years ago, the Citizen Science Association hosted their first conference where more than 600 people from 25 countries attended. That’s just one of several dedicated associations to pop up in the last few years.
Caren Cooper: I’m on the board of directors of the Citizen Science Association, which is one of several associations. There is a European association, there’s an Australian one. There [are] other ones forming in different parts of the world, showing that this is really a global movement.
Kasha Patel: That’s Caren Cooper, who is an associate professor at North Carolina State University, and she’s been involved with citizen science for around two decades. In addition to her work on the board, she’s written a book called “Citizen Science: How Ordinary People are Changing the Face of Discovery.” She is also the director of research partnerships with SciStarter, which is a directory of citizen science projects where anyone can browse projects and learn how to participate.
Caren Cooper: SciStarter is the largest inventory of citizen science projects in the world. There are thousands of projects on SciStarter and there are still so many more out there. There’s such a boom right now in citizen science in so many different disciplines advancing so many different areas. In engineering, in public health, in epidemiology. Gosh I could name a zillion disciplines. Things that we think of as science, and then other areas where we don’t think of as needing discoveries, like urban planning and governance and all kinds of stuff like that too.
Kasha Patel: Cooper says the number of projects added to SciStarter has been steadily increasing. Every month, they add one to two dozen projects to their inventory.
Kasha Patel: Why do you think that there is this sudden boom of citizen science projects?
Caren Cooper: I think that there are a lot of things that have come together. Part of it is technology to crowdsource people in a concerted effort. It’s not like it can’t exist without technology because before we had smart phones and internet, people did amazing, largescale projects. But it definitely helps make it happen.
And having a lot of people who are super civically engaged and wanting to be part of things like research projects.
And then from the scientist side of things, I think there’s just more and more recognition from scientists realizing that there are scientific frontiers that they can only start to investigate and push on with engagement from the public and with these citizen science methods, of being like “Wow. People know things, people observe things, people are all over the place where I can’t be as a scientist. And they can collaborate on research projects.” And it just leads to so many types of discoveries.
Kasha Patel: If you asked me seven years ago, I would have thought of citizen science as an outreach project, I would have thought that the quality of data was not good enough for scientists to use. Is that true or a myth?
Caren Cooper: It is a common misperception that citizen science data are no good. For one, people do have a lot of expertise, people who are great at identifying birds, people who know their butterflies, who know how to monitor stream water or weather. People as hobbies become great experts at things.
There are so many ways to handle data quality. There’s well over a dozen ways, it just depends on the project. Some projects have consensus tools built into them where there might be some online classifying of images and it’s not just one person who classifies an image, but 10 or 20 people, until it reaches some sort of consensus. Photographs, like the fact that so many people have smartphones and different kinds of mobile devices that can take a picture, means there can be photo documentation that can be geo-referenced for a lot of observations. There are a lot of different low-cost sensors that people use in citizen science.
Kasha Patel: And actually, I used a low-cost temperature sensor when I drove around D.C. collecting data. In fact, practically everything Cooper is saying applies to why I decided to participate in that project. It was easy enough, I was interested in the subject, and I believed in what the researchers were doing. It was a way for me — a science enthusiast, as you will — to feel like I was contributing to meaningful research by just volunteering a few hours of my time. This is probably the closest I can get to being involved in real published research without spending seven years to get my Ph.D. And I like that.
Doctors are known to have nerves of steel. They treat gunshot victims and cancer patients with a cool head and a steady hand. But before they’re doctors, they’re just medical students, nervous and inexperienced. (slight pause) And then comes anatomy class. For many young doctors, anatomy class is their first intimate encounter with death, and where they learn to balance empathy and professionalism.
Reporter Kaitlyn Schwalje brings us the story.
Jenna Wozer: I remember thinking that no matter how much I prepared for that moment, I still was not going to know how I would react until I actually saw the cadaver.
Kaitlyn Schwalje: That’s second year medical student Jenna Wozer. It’s a wet and foggy night at the University of New England, and she’s telling me about her very first patient — a man she only knows by age and cause of death.
Jenna Wozer: You walk in and it’s very clean. Just tables everywhere. Silver tables that are a bit taller than waist high. They’re just covered in black bags and you know what’s in them but you can’t see anything.
Kaitlyn Schwalje: Do you remember the moment of unzipping the bag?
Jenna Wozer: Yea, the zipper didn’t work very well. *laughs. So, [that] you know, prolonged the anticipation. My donor was 84 and his cause of death was blunt force trauma to the head, which leaves a lot to the imagination. I remember not being able to look at his face yet, even though that was part of our assignment. You know, humanizing somebody before you go to learn about their anatomy is a difficult thing because you’re supposed to sort of separate that.
Sabine Hildebrandt: There is no culture in the world that does not have some sort of taboo surrounding the violation of the human body after death and what we’re doing in anatomy is on the face of it a violation of that taboo because we are basically destroying the intactness of the whole human body.
Kaitlyn Schwalje: Dr. Sabine Hildebrandt has worked as an anatomical educator for the last 20 years. She holds positions at Harvard Medical School and Boston Children’s hospital. And she works with medical students in their first year of study as they enter the anatomy lab.
Sabine Hildebrandt: It is not normal to cut into a human being, even a dead one. So this is basically a negotiation between society and the scientist to be allowed to break this taboo.
Kaitlyn Schwalje: The transformation from student into doctor doesn’t just happen after memorizing the names of body parts or learning how to set a fracture. There’s also this big emotional element they need to practice. See, doctors are given the impossible task of viewing their patients both as fellow humans — as mothers, and brothers, and friends — but then also as bodies that need fixing, sometimes using invasive methods. That takes some objectivity and distance. And the very first time this balance is practiced is often in the anatomy lab.
Sabine Hildebrandt: What [the students] learn is this very important balance between, on the one hand, empathy from human being to human being, but also a certain detachment.
Kaitlyn Schwalje: In the last few decades, human anatomical education has shifted to what’s called a humanistic model. It’s a deliberate move. The cadaver is no longer just some specimen to dissect, but instead a student’s first patient. The gruesome history of bodysnatching has been replaced with ethical body procurement from consenting donors. And institutions now work to cultivate an atmosphere of respect given to the donors and all harvested tissues. Many programs also build time for reflection into lab schedule, often in the form of a memorial service held for students to thank families of donors.
Memorial service speaker: The choice that your loved ones have made to be a donor, to teach the next generation even after their own death, was one of courage and forethought and extreme generosity that is appreciated beyond measure.
Kaitlyn Schwalje: This new humanistic approach to educating young doctors has one real aim: to teach the students how to build professional relationships with their patients; when to connect and when to find distance.
Sabine Hildebrandt: If you’re completely empathetic with the donor body, you don’t dare to cut into the body donor, and on the other hand they cannot become too detached because then they become inhumane. We want them to understand that this is a difficult balance and remains a balancing act throughout their life.
Kaitlyn Schwalje: The anatomy lab is then an ideal training ground for learning this balancing act because nothing is really at stake, no one lives or dies because of decisions the students make. As a result, the students have the freedom to focus on their learnings and the chance to be self-reflective. Here’s medical student Jenna Wozer again.
Jenna Wozer: I remember the first time I saw my donor, I was struck by the fact that the person had lived a whole life. And now they’re before me and I knew nothing about them except their age and their cause of death.
Kaitlyn Schwalje: This conflict is a sign that Jenna is on the path to becoming the kind of doctor her university hopes to nurture. Able to carry out her duties but able to reflect on the humanity of her donor.
Frederick Way is about to enter hospice care. He’s also signed up as a body donor. If a medical student one day reads his file, it will state he died of esophageal cancer.
Frederick Way: When I first got the diagnosis in the hospital, I kept asking, well, how bad is it? Soon as the eyes drop, you know people are keeping something from you.
Kaitlyn Schwalje: Fred was given 4 months to live nearly 2 years ago. While he’s defied the odds, there are physical signs of his sickness. He’s lost more than 50 pounds and some days there’s a lot of pain in his stomach. But he’s certain in his decision to donate his body.
Frederick Way: I hope in whatever capacity they use my body for, that it benefits somebody somewhere.
Kaitlyn Schwalje: Suppose your body were used to teach medical students. Would you want to say something to them?
Frederick Way: Well yeah. Get it right the first time because this is the only one I got to give ya. [laughter] I ain’t got two bodies to give ya, so you better get it right the first time.
Kaitlyn Schwalje: While the students who learn from Fred’s body won’t know who he was in life, they’ll learn from the life he lived from his scars and his tumors. And they’ll become better doctors for having met him.
Kasha Patel: It seems like there are so many medical solutions for diseases or ailments nowadays. Some of them are easy, some are scary, and some a little odd. And sometimes taboos make it hard for patients to get a treatment they really need. Susan D’Agostino wrote an article for Undark about her experience with a DIY fecal transplant. To learn more about her experience, Seth Mnookin talked to Susan. Seth is a journalist, author, and director of MIT’s Graduate program in science writing. Take it away, Seth.
Seth Mnookin: It is my pleasure to welcome to the podcast Susan D’Agostino, who wrote a really incredible piece for Undark earlier this month called “When an FDA Ruling Curbed Fecal Transplants, I Performed My Own.” Susan, welcome to the Undark podcast.
Susan D’Agostino: Thank you so much, Seth. I’m delighted to be here.
Seth Mnookin: So in the piece, you describe how all this came about and how you first got really sick and then what happened from there. Can you take us through that process and what it was like?
Susan D’Agostino: Well, this was about five years ago in 2013. I had taken a course of antibiotics for a different condition. Soon after, I got very, very sick. I ended up in the hospital and was diagnosed with an antibiotic superbug known as clostridium difficile. The standard treatment at the time was another antibiotic known as vancomycin. So, I follow doctor’s orders and I took that, and I wasn’t getting better. When I finished that course of antibiotics and still wasn’t better, my doctor prescribed the exact same drug again. I was very, very sick and I began to lose confidence that I would get better.
Seth Mnookin: So what is C. diff and can you tell us how this came about, how you first got infected and what the symptoms of a C. diff infection are?
Susan D’Agostino: Sure. The main symptom of C. diff is debilitating diarrhea. The CDC a few years ago noted that about 14,000 Americans die annually from clostridium difficile or C. diff. As I understand it, and I just want to state from the beginning that I’m not a doctor, but as I understand it, there are two different ways, at least, to contract clostridium difficile, which is also known as C. diff. About 5 percent of the adult population are carriers of C. diff. We all have good and bad bacteria, and some of those bad bacteria may be C. diff. So if the balance in your colon is upset, the balance of good and bad bacteria, then the C. diff gains a foothold and is allowed to rise up and can take over.
Another way to contract C. diff is to pick it up from some external source. It’s a very, very hard bacterium to eradicate. You know, you can’t … Alcohol sanitizers don’t work against it. Bleach does not work against it. The spores can live on cold, hard surfaces for months. So, it does tend to be present in hospitals at a pretty alarming rate, at least my opinion. Or if you come into contact, you know, you go into a bathroom where maybe somebody is either a carrier or currently suffering from C. diff and you can pick it up that way as well.
Seth Mnookin: So in the piece, you describe how this all started when you were prescribed an antibiotic for a different infection and that was actually the first time you had taken antibiotics in several decades. And it sounds like your suspicion was that you were one of those 5 percent of the population that is a carrier and when you took the antibiotic, it lowered your resistance and that is how you went from being a carrier to having an active infection. You go on to describe in incredible detail what that was like and how first you wanted to protect your family and make sure that they didn’t get infected, but also just how you were really, for a period of time, just living in the bathroom. You describe going to the bathroom sometimes 30 times a day and you ended up just sleeping, to the extent you could get sleep, really sleeping on the bathroom floor. Could you tell us a bit about what that was like?
Susan D’Agostino: It’s funny. One yardstick that we often use about for pain in society is childbirth. There’s no question that C. diff was much more painful than childbirth. This was… there was no sleep. There was no reason to leave the bathroom. I also, as a mother, was concerned about infecting my household when I understood that I could expose my family to it.
Susan D’Agostino: I should say that it would rise and fall. I would go on the vancomycin and maybe I would start getting a little bit better. But then the minute I went off, when I finished the course, it surged back. So, this was over a period of months where the outcome was unclear, but there were moments where I thought, “Okay, maybe this will work.” But then, there came a point where I understood it never would if I stuck with the course that my doctor had set for me.
Seth Mnookin: You describe how, after a number of rounds of treatment, at one point when it was clear you weren’t getting better and it seemed in some cases the infection was getting worse, your body was not able to clear it. You had a conversation with your doctor and the doctor essentially told you that it was time to get your affairs in order. That sounds like just an incredibly chilling conversation to have. It must have been absolutely terrifying.
Susan D’Agostino: Yeah, it was chilling. That’s a good word to describe it. It reminded me at the time of … My mother had, before this, long before this, my mother had died of cancer. Shortly before she died, she had gone to the hospital with internal bleeding. A couple of days after she was admitted to the hospital, they discharged her. I was there with her, and I was very confused. I said, “This is crazy. They’re discharging you, yet you still have internal bleeding.” My mother turned to me and said, “They’re sending me home to die.” My mother’s words came back to me in that moment when my gastroenterologist was talking to me, when I realized that I could not count on my doctors. Low and behold, my mother did die shortly after that. She was in the end. Given her condition, she was glad to go home and be at home. But my reaction as a 40-something mom who had meaningful work and a lot of life left in me was “I’m not ready to die and I’ll take care of this myself.”
Seth Mnookin: So what did you do then at that point? You’re not ready to die, understandably, and at the same time you have every health care provider that has come in contact with you telling you that there’s nothing else they can do, that they’ve done everything they can and essentially, you’re going to have to ride this out and hope for the best.
Susan D’Agostino: I had already at that point learned about … There was a Scientific American article by Maryn McKenna where I had read about fecal transplants. That let me know about this option, which then sent me, actually, reading peer-reviewed articles in the New England Journal of Medicine to understand what the latest research and cures were. My doctors at the time were not ready to talk about it. It turned out that my experience was not unusual, that many doctors at the time were turned off by the unappealing aesthetics of the procedure. And you know, they just shut down conversation before it even began.
Seth Mnookin: I found that kind of incredible. You’re going to gastroenterologists, doctors who deal with the body on a daily basis, and really asking about a procedure that had literature supporting it. And it seems at this point it was a last-ditch effort. What was the reaction of your doctors when you started to ask them about this?
Susan D’Agostino: I would describe their reactions as an attempt to immediately shut down conversation. They used words like yuck and gross and told me I didn’t want that and that I should continue taking the antibiotics. There was, and again, this is as a patient who was in a very bad spot, not feeling well, sick, discouraged. I perceived a little bit of, you know, “That’s gross. Why are you even thinking of doing something that gross?” So, I didn’t … The conversation ended before it began on multiple occasions before I abandoned the medical community. Because at the time, it was actually there … You know, the FDA had relegated fecal transplants to clinical trials. Not every doctor was able to offer it, but there were some who could have offered it, and my doctors might have directed me to those doctors if they had been open to discussing it.
Seth Mnookin: Why do you think they reacted in that way?
Susan D’Agostino: I believe, if I want to think as kindly as possible about these doctors, I believe that they were constrained by some cultural taboo about feces. I think that that’s something that we need to address on a cultural level. I don’t think that any one doctor was out to get me. But, I do think that we need to be more open to solutions that may sound unconventional. This, I should point out here that this is not new knowledge. I discuss in my article about how it was done as early as 4th century in China and that there’s actually a long, long history about what a miraculous cure it is. It did appear. It wasn’t in the scientific literature until about the 1950s. But beginning then and moving forward, it was discussed in the scientific literature and often celebrated for what a miraculous treatment it can offer to patients who are very sick.
Seth Mnookin: So can you explain for us first, what exactly a fecal transplant is, and why that’s something that might help? What that does.
Susan D’Agostino: Sure. So again, I’m not a doctor, but everybody has what we call a microbiome in their colon, in their gut, and that on a good day is in a healthy balance. That allows us to function, to eat, eliminate. Mine had been upset. And you know, maybe even scientists don’t know exactly what the specific right balance is. So until we can actually isolate exactly what good bacteria we need, it sounds like a crude, but yet it’s a very effective method, is to take feces from a healthy person who presumably has a good balance of these good and bad bacteria and actually transplant it into the colon of a sick person. It’s that simple. I think some people do it by swallowing a pill that has the feces in it. Others use a tube, a nasal tube, or you can use an enema bottle and go in the other way, which is what I had done.
Seth Mnookin: Since your doctors were unwilling to work with you, it was up to you to find a donor on your own. Who did you turn to in that situation?
Susan D’Agostino: I ultimately asked my 11-year-old daughter. She was 11 at the time. That was fascinating to me, actually, because her response was perfectly opposite to that of my doctors’. She was curious. She had a lot of questions. She was amazing. She says, “It’s a little gross, but weird and interesting. Maybe it will work.” In the end, she was fully on board.
Seth Mnookin: Ok, so you’ve made the decision. You’re going to administer a fecal transplant to yourself. You have your 11-year-old daughter as the donor. What do you have to do then for preparation because you’re obviously not doing it in a doctor’s office or in a hospital. So how did you prepare and how much did it cost? What did it take to do?
Susan D’Agostino: I’m sure my insurance company paid hundreds of thousands of dollars for my ER visits, drugs, hospital visits over that five-month period. When I prepared for the transplant, I did have to take one last round of the vancomycin. The idea was to kill everything, to wipe the slate clean so that the donor material could take up residence fully. So, I fasted for two days because the other idea was to just get everything out and not put anything else in. Then, I had to wait for the donation, which of course, that comes with it comes.
Again, there at the time, maybe there has been more progress since, the [most of the] bacteria in feces is anaerobic, which means that it doesn’t live when it’s exposed to oxygen. So, you really want to not have much time between when the donation is made and when the transplant takes place. It was actually quite convenient to have somebody in my own home. My husband, in preparation, had gone out to the store. I think the entire receipt was $17, you know which is for a miracle solution is noteworthy, especially after the hundreds of thousands my insurance company had paid for ineffective solutions.
He purchased a blender, a strainer, a bottle of saline. I think that was it. Oh, and an enema bottle. Oh, and then a cap for catching the donation in the toilet so it did not go into the toilet water. Yeah. So when the donation came, he moved quickly and put the sample in the blender with the saline, strained it so that it was just the liquid, and put it in the enema bottle, handed it to me.
Seth Mnookin: So at that point you have your medical team — your husband and your daughter. And you’re prepared. It sounds like you had a protocol in place. Was it something you just figured out on your own?
Susan D’Agostino: No, definitely not. I was actually going to highly reputable sources, peer-reviewed journal, articles that gave hints. It wasn’t that they actually gave a recipe card, because there was a lot of misinformation on the internet. There wasn’t a lot of information about fecal transplants, but some of it was suspect. So, I really relied on legitimate sources. Again, certain journals have vetting for their articles. I trusted what I was reading in those peer-reviewed journals. The saline, the enema bottle, the don’t let it be out in the air for too long, lie on … I forget if it was my left or right side after … All of these were not directions that the articles gave me, but clues that I picked up from the articles.
Seth Mnookin: Ok so now your daughter has, as you phrased it, made the donation. What happens then? What was that process like and what happened after you administered the fecal transplant to yourself?
Susan D’Agostino: You know, I do remember thinking that apparently this was illegal. I remember thinking about women who have had, you know, an abortion before abortion was legal and maybe they felt abandoned by their doctors. I remember thinking, “Well, at least my illegal procedure only involves an enema bottle and not a hanger.” You know, I didn’t know what was going to happen. My colon had been in constant spasm, so there was some concern, or I had some concern, about would my colon even be able to hold the donation for long enough for the new microbial profile to take root. If it couldn’t, then I really was out of ideas.
I was just on the bathroom floor and my plan was to just stay there and not move and hope that I could hold it in for as long as I could. I write about this in my article. One day you’re going to the bathroom 30 times a day and then … I actually fell asleep on the bathroom floor. It had been a long time since I had slept through the night, and I fell asleep. At some point I moved to my bed, but it was the first night in months that I slept through the night.
Prior to the transplant, I remember thinking … I’m a writer. I love words. I remember thinking that the word transplant sounded a little bit inflated, because after all, you think about heart transplants where somebody has their chest cut open. But after the transplant, I decided that transplant was the right word, that really, I felt completely different, that something had been transformed. The next morning, I woke up and I knew that I was better. Of course, I still had to walk through the upcoming days, and weeks and months, and years, but I was right. I never had a recurrence of C. diff. I was able to eat. I was able to resume my normal life and begin to heal. It took me time to regain the weight and strength, but as far as my gastrointestinal system, it was a miracle cure.
Seth Mnookin: My last question then, is what prompted your decision to write about this? It’s obviously, as you said in the interview, a topic that a lot of society treats as taboo. When you write personal stories like this and put yourself out there, you often can get some harsh replies. It’s something I’ve experienced. What finally made you say, you know what I’m going to write about this and put it out for the world.
Susan D’Agostino: Yeah, that’s a great question. Well, first, I’ll let you know that I tried writing this article a few years ago, and I put it aside. It wasn’t time to write it yet. I needed to have more distance, understand what happened exactly, and process it myself a little bit. I thought a lot about how I wanted to write my article, and I realized that I wanted to present it as, you know, that we are in the process of understanding how, what the right treatment is, and that there may be lessons to learn from that, that maybe when somebody is saying, “Oh, this is a rogue treatment, but yet somehow, it’s working, that maybe we should sit up and listen.”
I think you mentioned that it was a personal topic, and you’re right. You know, I was ready, and that if I can be part of reducing shame, because I don’t think there should be shame. I’ve said a few times that I’m not a doctor, and I am definitely not here to give medical advice, but I do have an agenda for patients, which is that my hope is that my article can empower patients to take an active role in their own diagnosis recovery to not hand over everything to their doctor, and especially in cases where a doctor suggests that there are no options, that maybe there is still something, that maybe you can do some research.
Seth Mnookin: Well Susan, as I said. This is a really remarkable piece and this has been a wonderful conversation. I’m very glad you wrote it and needless to say I’m glad you’re here for us to have this discussion and I look forward to reading your work for many, many years in the future.
Susan D’Agostino: Thank you so much for having me. It’s really my honor.
Seth Mnookin: That was Susan D’Agostino, who is a mathematician and science writer. She’s currently getting her MA in the science writing program at Johns Hopkins and is also a Taylor/Blakeslee fellow of the Council for the Advancement of Science Writing.
Kasha Patel: Ok Undark listeners, that’s all for this month. We’re produced by Lydia Chain. Music is from the Undark team and I’m your host, Kasha Patel. See you next month.