EP 111: Designing Sh*t | Saffron Cassaday
Today, we are going to take a deep dive into the promising therapy of fecal transplantation.
Saffron Cassaday directed her first documentary feature film called Cyber-Seniors in 2014. The film followed a group of senior citizens as they learned about the internet from teenage mentors and the connections made both on and offline. The film has been broadcast in 40 countries including on PBS, Netflix and CBC in North America. Cyber-Seniors screening events were supported by over 900 partners including AARP Foundation, Best Buy Foundation, BlueCross BlueShield Mn, and hundreds of schools, universities, and libraries.
In her new film “Designer Shit”, Saffron explores the efficacy of fecal transplant for her condition ulcerative colitis, using herself as a human guinea pig.
Episode mentions and links:
https://www.saffroncassaday.com/
Restaurant Saffron would take you to: Bud Namu Korean BBQ
Follow Saffron: Instagram | IMDb
Episode Website: https://www.designlabpod.com/episodes/111
Episode Reflection
I want to start this reflection by thanking our guest, Saffron, for sharing her personal journey with the world. So many people suffer with their disease in silence, and it is never easy to open your entire self up to others so that may learn from your experience, share in your suffering, and rejoice in your triumphs. Saffron gave us a window into her world and what it means to live with a disease like UC. And perhaps by doing so, she will provide some hope and comfort to some of the 1 million people, in the US alone, who also live with this disease.
She also gave us a new perspective on our own biases and how afraid we are of the unfamiliar and unspoken. It’s so easy to discount the lived experience of an individual when you are trained to trust the science created by the many. An N of 1 doesn't make for good science, but it doesn’t mean that a person's experience and perspectives aren’t valid. This is one of the great challenges of those who practice medicine. I fully believe that the people who tried to dissuade Saffron from seeking “alternative” treatment did so because of genuine concern for her safety, but in an attempt to protect those we care for from further disappointment and harm, are we also respecting individual autonomy and making sure that we validate their lived experience?
Saffron is a true maven. Someone who is willing to take the first steps down an untrodden path and then share their journey with others so that their journey may be easier. As Bon said in this week’s episode, wouldn’t it be nice if there was a Designer Shit documentary for every chronic disease?
Oh! BTW…I got to watch the screener of Designer Shit so here’s my extremely novice and totally unbiased review:
Designer Shit is the shit! If you like this show, you’ll definitely like the documentary. There is something there for everyone. Want a great human story? Want to learn how to be your own healthcare advocate? Want to learn how to be a supportive partner for someone with a chronic disease? Want to geek out about the gut microbiome? Want a primer on how to communicate heavy health topics in a fun and easy-to-understand way? Like poop jokes? Designer Shit has it all! This is a documentary about life, with all of its ups, downs, worries, and laughs. Saffron’s authenticity shines throughout in how she handles her shitty situation and it somehow makes our own challenges seem a little less insurmountable. Saffron didn’t have to share it all, but we’re glad she did.
Written by Rob Pugliese
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Bon Ku: Today, we are going to take a deep dive into the promising therapy of fecal transplantation.
I'm Bon Ku, the host of Design Lab, a podcast that explores the intersection of design and health. Our guest is Saffron Cassaday. She directed her first documentary film called Cyber Seniors in 2014. This film followed a group of senior citizens as they learn about the internet from teenage mentors and the connections made both on and offline.
It's been broadcast in 40 countries, including PBS, Netflix, CBC North America, Cyber Seniors screening events were supported by over 900 partners.
Saffron has a new film coming out this year called Designer Shit. She explores the efficacy of fecal transplant for her condition, ulcerative colitis, using herself as a human guinea pig.
On our website designlabpod.com you can find a transcript of the show, show notes to learn more about the guests and get links to related content from each episode. And you'll be able to sign up for our newsletter
each week our producer, Rob Pugliese will send his reflections on the episode. You'll get show notes and links right into your email inbox.
I got a really nice message on Instagram from listener Seth Gray in Canada. Thanks, Seth, for listening to the show. Go to Apple Podcasts and Spotify support us. Give us five stars. Follow us, leave us review and tell someone about the podcast. Now my conversation with Saffron Cassaday
Interview
Bon Ku: Saffron welcome to Design Lab. I'm so excited to talk about your upcoming documentary.
Saffron Cassaday: Thank you for having me. Excited to be here.
Bon Ku: It has the coolest name, it's called Designer Shit. Tell me about what the documentary is and why you decided to make it?
Saffron Cassaday: Well, the documentary is about fecal transplant, which is a procedure in which you take stool from a healthy donor and you put it in the gut. Of a patient, in the hopes of kind of rebalancing their microbiome. And we're seeing that this treatment can be used to treat a variety of illnesses. Uh, and in the film I meet with some of the world's leading experts on this procedure, and I actually do the procedure myself, using myself as a human guinea pig to treat my colitis.
Bon Ku: There's so many ways I want to jump into this, but let's do some background first with, with the science. This is not something I learned in medical school, at all. Tell us what ulcerative colitis is first and kind of your perspective on it in doing research with film and your own personal experience.
Saffron Cassaday: Sure. Ulcerative colitis is an autoimmune condition in which the immune system attacks the colon. This can lead to some really nasty symptoms like diarrhea, blood, mucus. There are good medications for this condition, but they can be kind of hit or miss. And in my case, my symptoms started out mild and got progressively worse as years went on. And after 10 years, I wasn't getting a lot of relief from the medication I was taken. Um,
Bon Ku: Yeah. And I'm not a gastroenterologist, but I, I do treat patients who have these flares of their ulcerative colitis when they present to the emergency department, and it's, it is debilitating illness. And I was struck by that conversation that you had in the beginning of your documentary when you're, talking to your doctor and he asked you a question of like, well, it's bad ,but it not like that bad. Right? But then you walk us through like your daily life and it impacts every single part of your life. And, often I think I have blinders like this when I'm on as a,, as a physician and I see this in my colleagues and just trying to understand how disease, especially chronic disease, impacts a patient's like, every second of it.
and, and yeah. I was kind of curious to know about sharing your journey on film. Was that something scary for you to.
Saffron Cassaday: It was, but I think at the time I was feeling so desperate at that point that I had less embarrassment, I think when I was first diagnosed. I was like, wow, this is an embarrassing disease. And as time went on and it just affected every aspect of my life, I was less embarrassed. I was more kind of angry. I felt a lot of angst, and I think that's shown in the first scene with my doctor.
You know? In the room with my doctor, we have this conversation where he says, asks general questions like, your life's not that severely impaired. Right? And in the room I say, no, not that severely impaired. But then you hear my inner monologue, which is I'm going through my day-to-day life and how it affects me.
And it was only through editing the film and watching myself in that scene where I'm like, wow, I really didn't tell him how I was really feeling. That's kind of on me. I really do kind of keep a lot in when the truth of the matter is, you know, there are these real symptoms that are painful that I'm dealing with every day, but it also affects my mental health.
It affects my relationships. You know, I was at a point where I was having anxiety every single day in normal situations. You know, driving in my car. If I got stuck in traffic, I would panic cuz I can't get to a bathroom. Grocery store. If I was in the lineup and you know, I had my items on the conveyor belt, and then if I had to run to the bathroom, I was like, okay, I'm just gonna ditch all my food and just run to the bathroom.
I always, every single situation I was in, I just had this, you know, worst case scenario play out my head. I always had to have an exit strategy. It was, you know, taking up a lot of my mental energy.
Bon Ku: And how did you first discover that there was a treatment that may help cuz right now the FDA hasn't approved fecal transplant for ulcerative colitis, but there's a lot of research going on right now with some promising results.
Saffron Cassaday: Mm-hmm. . So I first heard about fecal transplant for colitis about 10 years ago, 10 years before I did it myself, I had heard about it. I read an article in Toronto Star, which is, I'm in Toronto, so our local newspaper about, this Crohn's patient severely ill with Crohn's disease. His mother was his donor and they did DIY fecal transplant at home, and it completely cured his Crohn's. I'd say cured because, you know, we never used the word cured with these chronic illnesses. It could just be a really long remission. But you know, for him it had been five years of no symptoms, no medication, which was miraculous. I had never heard of anything like that happening, but I also thought it sounded disgusting and weird.
And at that time there wasn't a ton of research on it. So I read about it and kind of went, you know what, I'm gonna put that in my back pocket. I'll probably never do it, but I wanna keep my eye on this research. And it wasn't until 10 years later when, I was starting to feel really desperate that I circled back to that research.
And at that point, the research had come a long way. It still is not FDA approved, it's still not really legal for a doctor to help you do this. but we are seeing in clinical research trials for colitis, we're seeing about 30% remission rates with fecal trans.
which is actually quite good. I mean, that's on par with a lot of biologic treatments, which is the main form of treatment for my condition.
So
Bon Ku: So right now it's illegal for a doctor to help a patient do this, treatment for ulcerative colitis. Is that correct?
Saffron Cassaday: That is correct.
Bon Ku: That's crazy.
Saffron Cassaday: I know. It's an issue I'm facing with coming out with this film that we are having conversations with doctors and patient advocacy groups who aren't necessarily in favor of supporting this film because it features someone myself doing this procedure DIY which is not something the medical community is really promoting at this point.
They want more research. They want FDA approval. So I have heard of naturopathic doctors in certain states being able to help people with fecal transplants by coaching them. So they'll say, if you find your own donor, I will run tests on that donor to make sure that they're a safe donor for you. I will coach you on how to do fecal transplant.
I will not touch the stool, I will not touch the blender. I will not touch you. And legally I think I'm safe in doing that. But a lot of doctors, you know, won't even go that far. They won't help you test a donor because they don't wanna be seen as encouraging this.
Bon Ku: Yeah. And I'm all in favor of regulation in terms of medications and treatments and you know, this is not something that's taken lightly, but it's not like you just decided overnight, just go, hey, I'm just gonna try this and I'm gonna DIY my health. You've had a long journey, struggling with disease and found the conventional treatments out there just didn't work.
Saffron Cassaday: Mm-hmm.
Bon Ku: It's not like you rejected modern medicine or like the current therapy for ulcerative colitis.
Saffron Cassaday: Yeah, I mean, I stand by my decision because I do feel that based on the current regulatory system, I understood that my doctor couldn't help me. He also didn't have a lot of knowledge about this treatment. It just wasn't really on his radar. So he would say things like, we don't have a lot of research for that.
Whereas I was reading research kind of going, actually, there is some research that's promising. It's still not FDA approved, but the research actually is promising. Through the film, obviously I met a lot of the top researchers and I learned what I could from them and based on that, I made a decision which did include some degree of risk. But that was something I was willing to take on because I felt that I needed to do something different than what was being prescribed to me.
Bon Ku: Yeah. We had a guest on who, who's a friend of mine, Dr. David Fegenbaum and he has a life-threatening disease called Castelmans Disease and he almost died from it several times. He was literally read his last rights by a priest in the hospital, when he, he was sick with this disease back in 2010.
And what he did himself was a DIY health where he took a drug that was not for Castleman's disease and it's a off-label use and he was just doing research and found that, hey, this, this may help. And he administered, got permission to use this drug on, on his own disease. And, and I see that in the rare disease community because the options are limited.
And they're as unlikely to have the funding to dig into newer treatments. And so, What David does, he's has an organization that is looking at, off-label uses for drugs that are FDA approved in treatments of other, other conditions because no, no better options are open and, and patients can't wait cuz they're suffering for regulation to keep up.
Saffron Cassaday: Yeah, absolutely I listened to that podcast interview and I loved it. I think that what he has going for him though is that he does have a medical background. I think a lot of the patients you're describing who have these undiagnosed confusing medical conditions can be looked at as quacks for some of the treatments that they try, and I think it's really harmful to label these people's crazy for trying different things because you know it, it actually shows that they just haven't given up on themselves yet
Bon Ku: Yeah.
Saffron Cassaday: And the worst thing they could do is give up on themselves because they haven't found the answer yet. It doesn't mean that the answer doesn't exist.
Bon Ku: Yeah. And many of these patients are, are brave to be able to do that cuz of I can imagine a lot of the pushback. That the medical community that we around speaking, quote unquote the medical community, give to patients when they are trying alternative therapies.
Saffron Cassaday: Mm-hmm. . Yeah. And I have to say that when I made the decision to do fecal transplant, when I made the decision to do a film about it, the scariest thing, you know, I wasn't that scared of the risks because I did feel that I did some due diligence to eliminate my risk. My biggest fear was it was scary to put myself out there of trying something new.
I had this fear of failure
Bon Ku: Mm.
Saffron Cassaday: That if I step out and try something new and it doesn't work, people just think I'm an idiot. And that was the scariest thing, the believing in myself that this might work well. I feel like an idiot for even believing something will work because I've been told over and over and over again that I will never find something that works, that gets into your head.
At a certain point, you do lose faith in yourself and your ability to heal.
Bon Ku: It's so hard to break conventions in medicine we're, we're very slow. I, I think of someone who won the Nobel Prize, Barry Marshall, who won the Nobel Prize in 1982, because he found a link between H. Pylori and Peptic Ulcer Disease. But back then, the scientific community would not believe that a bacteria can actually cause peptic ulcer disease.
And even though the research was there growing research, and he actually, I, I dunno if you heard this or, but he actually like infected himself with H. Pylori. He got so sick that he ended up like in an intensive care, he hospitalized in order to prove to his colleagues who thought he was a quack, that a bacteria could cause peptic ulcer disease.
So even when you're like a scientist researcher and you're trying to challenge conventional medical norms, the pushback that you get.
Saffron Cassaday: Yeah. Wow. I think you do see that, there's a spectrum of doctors, some of who are unfortunately not very curious and some of who you know, like to push the envelope. And I actually think in our film we had a range of experts who exist along those spectrum. Some, you know, were more cautious, but we have one expert, Dr. Barody who's from Australia, who's one of the leading researchers in fecal transplant. He kind of, So, let me think of the word right way to describe I think of him as very much a patient advocate. but he does kind of have this attitude of, I don't care what's approved and what's not. I'm gonna try new things.
And if I see that it's working even anecdotally, I don't think I should have to hide that from patients. I do think patients should be encouraged to do their own research and try something, even if it's not approved. And I think he gets flack for that, where other doctors would say, you know, you really shouldn't be encouraging your patients to do this.
Dr. Barody and he really kind of thinks I'm here to help them. It's not our job to prevent them from getting better.
Bon Ku: We were talking before we started recording of like, I wish a documentary like yours could be done with every single type of disease, cuz it just Shows so much there, like the humanity, that gives me empathy for patients who have ulcerative colitis and kind of like seeing where science fails or science can't meet the needs and, seeing what options there are for patients.
Sometimes there there's, there's not that many and I was curious to know what inspired you to make this. did you, because it is a huge undertaking, and kind of take us through that journey. because you are a filmmaker, correct?
Saffron Cassaday: Correct. Yes. I am a filmmaker, so I'm always looking for a new topic for films. This topic I just became obsessed with in my own personal life. So I was researching fecal transplant nonstop all day, every day I decided that I might want to do it, and I wanted to meet all these researchers that I had been reading about.
So,
Bon Ku: Oh, cool.
Saffron Cassaday: decided to make a documentary film so I could meet them also, you know, this desire, I had this desire to just talk about it and I thought, you know? Other people must want to know about this subject, and if there's a film out and more people hear about this, it'll just kind of become more of the zeitgeist.
People will be more aware of this treatment, and that's what I want. I don't want there to be this stigma around it. I want us to be able to have a conversation. I want people to be more interested in the research. I want the research to continue. Because I do think fecal transplant is a very promising area of research, and I think we're gonna see a lot more of it in the coming years.
Bon Ku: Yeah. how do you, do you go about pitching it to get a, crew together to start filming and editing and storytelling.
Saffron Cassaday: the crew was very small. We had one camera person who is my good friend, Ben Ainsworth. He shot all my films with me, so it was just the two of us. And he did all the audio too. So on shoot dates, it was like he was lighting
Bon Ku: Whoa.
Saffron Cassaday: Recording audio and filming. And I edited the film so, That's,
Bon Ku: Unbelievable. as a labor of love.
Saffron Cassaday: it is a labor.
I mean, it took five years and not because it was that much work, it took five years because I was going through it myself at the time. There was a lot of space built in for me to kind of sit back and reflect and also monitor my symptoms because I think I went into fecal transplant thinking and hoping that it would be this magic bullet that would cure me after one transplant and it didn't.
So you see that in the film that . as promising as the research in this is, it's, we don't know everything about it yet. It isn't a magic bullet. Sometimes it works, sometimes it doesn't. Sometimes it takes a long time to work. So yeah, it was a long, confusing journey that I feel like I'm finally on the other side of.
Bon Ku: Yeah. In preparing for our, talk, I, you know, just was researching about the microbiome and just fascinated by this universe that lives within our gut. You know, one stat is like a gram of feces has more microbes than humans on the planet. And I think it's something about brain, gut health that we're just starting to learn.
And, and again, this is not stuff that I really learned about in medical school back in the day. Like this is all new information, even though I've been practicing clinically for many years. And you did such a great job explaining about it in your documentary about the complexity of, our gut.
Can you take us through that?
Saffron Cassaday: Sure. Where to begin? Yeah, so the microbiome is this collection of bugs and organisms that live in our gut that we're just starting to realize really affect almost every aspect of our health. Obviously gut conditions and gut illnesses like C. Difficile, Crohn's, colitis, IBS, but we're discovering ways in which the gut influences the brain.
In fact, there are really great studies coming out around autism. These studies began with the intention of seeing if fecal transplant could help improve gut related symptoms in autistic children. And they did find that fecal transplant can help those gut related symptoms, but what they found was for the kids who had improvement in their gut related symptoms, they had behavioral related symptoms as well. And what's even more interesting is that the kids who had benefit at the eight week mark, those benefits continued and were even greater two years later. So we're seeing that by implanting this new microbiome and allowing it to flourish, the benefits continue year after year.
Bon Ku: Hmm. And, you know, one of the diseases that I see a lot in patients, that's so, so, just violent is, C. Difficile infections caused by bacteria, clostridium difficile, where, we cause it by treating patients with a powerful antibiotics for other conditions like pneumonia, for example but then what it does, it just ravishes this, internal gut biome and that sometimes we can't even treat the patients. Because we just destroyed that normal protective flora. Is that where a lot of the early research around fecal transplant, occurred for Clostridium difficile infections?
Saffron Cassaday: Yes, and fecal transplant is incredibly Effective for C Difficile. I think with one transplant it can be up to 90% success rate. Beyond that, if you have two transplants, it's closer to 98%. And this is for patients who have failed rounds of antibiotics, cuz you know, you can get C diff through antibiotics and then usually the treatment is more antibiotics, which sometimes work, but sometimes.
It works for a short period of time and it recurs over and over and over again
Bon Ku: Weeks, weeks and months. There's like nothing. And we hospitalize these patients over and over again. It's so crazy.
Saffron Cassaday: And the way they C diff patients describe their experience with fecal transplant is like, I was sick for months and months on end. I never thought I was gonna get better. One fecal transplant. I woke up the next morning and had a normal bowel movement and it was just over. It's a miracle. Like it's incredible.
So this is where, you know, some of the research started that people really started to notice, this is an incredible treatment. We have to make this accessible, but how do we govern shit? How do we use shit as medicine?
You know, one of the big debates that the FDA had to decide on is, is stool a drug or a tissue?
Bon Ku: Yeah.
Saffron Cassaday: categorize it? And they decided in the United States and Canada as well that it is a drug because of the definition, something that treats or mitigates an illness. Therefore, stool is a drug. In this case, it's being used as a drug.
Bon Ku: My, my poop is a drug
Saffron Cassaday: it is
Bon Ku: That's crazy.
Saffron Cassaday: But it's an unapproved drug. So it is, it's a complicated situation because yeah, your poop is a drug, but your poop hasn't gone through all of the safety standards that the FDA requires. So you can't sell your poop as a drug. So how do we turn it into a drug? We are starting to see products come out. Usually there's some sort of manipulation done to the stool.
They've tried to isolate spores of bacteria so that it's no longer a full stool. It's aspects of it that are turned into a drug. So as those products become more readily available, we will see more access for c diff patients, which is great. It's desperately needed. And I am hoping that once we have a product, it will be used possibly off-label for other conditions, but certainly it will accelerate the research because now we'll have an easy product to use in a clinical research setting.
Bon Ku: You feature a company called OpenBiome in your documentary, can you talk about what that company does?
Saffron Cassaday: Sure. OpenBiome was at the time of filming in 2018. North America's first stool bank. So they were known for having these elite donors. They were based in, just outside of Boston. A lot of their donors were Harvard University students. And these were people this rigorous health screening, had the most top of the line pristine stool samples, which they would donate for a fee and OpenBiome would turn them into these slurries that could be used to treat c diff patients. Open biome then also opened a pharmaceutical wing called Finch. So this was when the FDA was still deciding is it a drug or a tissue? If, if the FDA had said it's a tissue, north America could have gone a different direction. We could be.
Hmm.
Accessing stool samples through stool banks because they said drug, those stool banks have closed.
So OpenBiome has closed, and now the focus is more so on pharmaceutical companies that are coming out with a drug product.
Bon Ku: Wow. How's it different from like sperm bank donation, because that's not considered a drug when you go and give your sperm samples so, you know, people could get pregnant.
Saffron Cassaday: Yeah. Or blood banks, kind of similar. Yet, I don't think that there's a clear answer on this. The F D A in the US chose to label it as a drug, but Australia for example, chose to label it as a biologic. So they are going the stool bank route. So now there are approved stool banks. You can only buy fecal transplant products from those approved stool banks.
Whereas in North America, we're gonna go buy an approved drug instead. I'm not sure which one is right. Really. I mean, a lot of researchers I spoke to in the film didn't have a clear answer either.
Bon Ku: Hmm. What I love about your film is that it's so like entertaining. And it's so funny, even though this is like a serious matter, you know, that sometimes like can be a little bit gross, but I, like, I was like laughing and was so entertaining and was that one of your principles at the onset to make it an entertaining film or did it just turn out to be that way?
Saffron Cassaday: I guess the humor was kind of unavoidable. I mean, when you're doing something so embarrassing and out there, you can't help but kind of laugh at yourself and laugh at the situation. I think people have different degrees of comfort when it comes to talking about poop. And to be honest, I am not a person who likes talking about poop.
I'm not that open with talking about these things.
Bon Ku: Oh, really? I am, I love it. I love talking about shit. It's like a favorite topic of mine.
Saffron Cassaday: Well, so does my husband and I appreciate people like that because I'm the one suffering with this condition and it's so liberating to me to be with somebody who isn't like so gross out by it. I'm like, oh, thank God I can like, you know, be myself. So it was
Bon Ku: He, and he's great in a documentary. He's so funny.
Saffron Cassaday: He actually loved being my stool donor. I think he, he took the responsibility very seriously, and again, he wasn't grossed out by it at all. He, he thought it was a very interesting procedure and he just thought, you know, if there's any way that this can help you, let's do it.
Bon Ku: I know this, the film is coming out , later this year, but I, I was curious to know what has been some of the early feedback that you've gotten? Maybe things that were surprising or how people have been responding to your film so far.
Saffron Cassaday: So the film has not been released yet, but already people are finding me. Patients are finding me. I'm getting a lot of emails and dms from people who are suffering from various conditions, but majority of them are IBD sufferers and parents of autistic children who have heard about this treatment and have Googled it and found my film and wanna know more.
So I'm really, I'm finding a lot of desperate people who are really interested in this information and they don't necessarily wanna go out and do DIY fecal transplant. They just wanna know more about it. They wanna know when is there a drug coming out? When will my doctor be able to support this?
Cause I don't want to have to do it on my own.
Bon Ku: Yeah.
Saffron Cassaday: I'm just not finding any options right now. And then from the medical community, you know, we have gotten some feedback that people are wary of a film that's coming out that's going to demonstrate DIY fecal transplant and the fact that it's something that a patient could possibly do at home and maybe we don't support or agree with a patient doing it at home. And I really hope that, you know, doctors in the medical community in general don't discount it based on that alone.
Bon Ku: Yeah.
Saffron Cassaday: Bacause you know, there may be some people who are inspired to do D I Y fecal transplant. I don't think that's gonna be the majority of people. I think, what I hope, the impact of this film is, is simply getting people talking about this research.
I think it's been very hush hush, especially with patients because doctors fear that patients are gonna wanna do it themselves. So it's this thing of like, shh, don't tell patients can't know about cause they're gonna go do it,
Bon Ku: Patients aren't smart enough to have this knowledge. Wish it should be kept within a priesthood of medicine that's been arguing that has been used so many times in the history of medicine.
Saffron Cassaday: Well, let me give you a funny example. So we met with this psychiatrist, Dr. Valerie Taylor, she's at Women's College Hospital here in Toronto. She was doing a study for fecal transplant for depression, bipolar depression and she was recruiting for this clinical study and she reached out to a bunch of doctors in the area and said, Hey, we're putting on this study, please let your patients know and if they're interested, direct them toward us.
And they heard nothing, crickets, no patients reaching out. So she went, oh, well that's disappointing. But I guess, you know, these patients are thinking, that sounds weird. That sounds gross. I have no interest. But we have to find patients. So they're like, let's try another route. They put an ad on Facebook. They were flooded by patients reaching out to them.
People who said, I have heard about this treatment. I've been dying to try it. Please let me into your clinical trial. People from other parts of the world saying, I will fly to Toronto to be a part of your trial. So based on that, she thought, are these doctors not passing this information onto their patients?
Perhaps because the doctor themselves thought, I'm not seeing a ton of research, promising research on this. I don't necessarily believe it's gonna help my patient. I think it's gross. I don't see why my patient would want to do this, so they're not necessarily passing that information on. Whereas the patients themselves actually are very interested. So I want more patients to be aware of this treatment, even if it's just to, you know, be aware that there may be a clinical trial going on in your area for your condition that you're eligible for. Patients should be aware of that because you'd be surprised how many of them are eager to access
Bon Ku: yeah. And there are the best type of research going on right now of randomized clinical trials on this. Love that you bring this into the mainstream because I think so many times patients suffer in silence. And, it's not like dinner conversation, like you're gonna go talk to your friends and family about it.
It's like very hush hush. And a lot of times patients are alone, suffering with a chronic disease that impacts every aspect of your life
Saffron Cassaday: Mm-hmm. Yeah, absolutely.
Bon Ku: there's so many questions, more questions I, I have, but I wanna like be sensitive to your time and you have a busy schedule. You know one question that we've been asking guests if one of our listeners were to come and, visit you, where would you take them out to eat?
Saffron Cassaday: Well, I love Korean Barbecue.
Bon Ku: Oh, my favorite. I'm Korean. Yeah,
Saffron Cassaday: I was living in Los Angeles for a long time and my favorite restaurant was Bud Namu in Koreatown. When I was suffering from ulcerative colitis too, I was on this diet that was like limited carbs, so I was eating a lot of like animal protein and just fruit and vegetables and I really found that like Korean barbecue was perfect cause I like had my meat and my kimchi and I always felt that it was like really light on my gut.
So yeah.
Bon Ku: Yeah, and that kimchi is probably gonna restore your flora, right?
Saffron Cassaday: Yeah, absolutely.
Bon Ku: Oh, that's great. Well, we'll, we'll put the link to the restaurant in the, in the show notes there. I
gotta check it out the next time I go to, LA and then we will, uh, we'll put the link to your documentary,website. And so when it, when it drops, listeners can go and find
Saffron Cassaday: it.
Yeah.
Bon Ku: Well, thank you so much for coming on the show.
Thank you for sharing your journey. just really honored to have you on.
Saffron Cassaday: Well, thank you so much for having me. This was fun.
Bon Ku: You can follow Saffron on Instagram at S a F F R O N C a S S a D a Y. And reach out to me on Twitter at B O N K U on Instagram at D R b O N K U. Design Lab is produced by Rob Pugliese, editing by Fernando Queiroz. Emmanuel Houston created our theme music and Eden Lew did our cover design. See you next week.
