Episode 4 - Smell Loss & Dysfunction

Welcome to the Smell-Out Podcast. I'm your host Irene Plax. Whether your sense of smell is unusually strong or you're the complete opposite, this podcast is for you. Let's get into it. Smell-Out. You smell that? It's episode 4, Smell-Loss and Disfunction. The absence of a sense of smell is called anosmia. Some are born without it and others lose it for a variety of reasons, including head trauma or illness, such as a viral infection. When smell-loss emerged as a feature of COVID-19 in March of 2020, it's signaled a change for the field of chemotherapy research, meaning the research of smell and taste our chemical senses. It's estimated that over 9 million people worldwide will have sustained smell loss. The community of scientists and patients who are studying and dealing with smell loss and dysfunction are at a unique moment and they have responded in powerful ways. Jennifer Tractman, Director of Development at the Monel Chemical Senses Center, will share resources and talk about this turning point in her field and what moving forward looks like. We'll hear from Dr. Danielle Reed, a researcher at the Monel Center and one of the founding members of the Global Consortium for Chemosensory Research, better known as the GCCR, which is a group of dedicated scientists and advocates that formed to share information and advanced scientific knowledge about the correlation between the chemical senses and respiratory illnesses like COVID-19. Katie Boateng, an in-nasmic patient advocate herself, is the creator of the Smell Podcast. She'll share her wisdom from over 90 episodes. While this episode will focus mostly on in-nasmia, you'll also hear mentions of smell-disfunctions. Porosmia is a distorted sense of smell where things that used to smell nice can smell unpleasant. Hyposmia is a decreased sense of smell and phantosmia is a condition where smells are perceived that are not really there. It's sometimes referred to as having olfactory hallucinations. Please check out the resources offered in this episode and if you or a loved one is new to smell loss or dysfunction from COVID or otherwise, pull up. This one's for you. Hi Jennifer and welcome to the Smell Yeah podcast. Do you want to go ahead and introduce yourself and what your role is? Sure. My name is Jennifer Tractman. I'm with the Monelle Center in Philadelphia and I am Director of Development and the Campaign Manager for the Smell for Life Initiative. I've definitely talked about Monelle on this podcast, but could you give us a quick background just in case people are tuning in only to this episode? Sure. The Monelle Center was founded 53 years ago as an independent center dedicated to advancing discovery about taste and smell of the chemical senses. It was actually originally founded as part of the University of Pennsylvania and today is an independent center with the same mission as it's Founding Mandate. Do you yourself do not have any issues with smell loss or smell dysfunction? Correct. Oh, that's a really good question. I don't. I am Norma Smek. I heard you recently refer to smell loss as a result of COVID as a public health crisis. I think we're estimating that there are 9 million people who are suffering from smell loss as a result of COVID, right? Actually, it's more than that, but what experts are predicting is that 9 million worldwide will have permanent or sustained smell loss because of COVID. So the numbers are much, actually much, much higher and the projections right now are that 90% of the people will regain their sense of smell and taste, which is really good news. But the 10% is that anticipated 9 million people. I want to talk about the word crisis. If you've lost your sense of smell or if it's been damaged or severely augmented, why is it so important to your health? Good question. I am on the phone all day long with people who have smell loss and they do seem very clear about it and it is amazing that we as Norma Smek are really truly unable to appreciate what the senses of taste and smell bring to our lives until loss to them. So the senses of taste and smell first and foremost bring you flavor. And it is in fact a combination of taste and smell that produces flavor. So your taste will bring you the five things that we are somewhat familiar with, saltiness, sweet, bitter, sour and umami. But it is the sense of smell that helps you distinguish, for instance, in a sweet taste, whether you're getting the flavor of grape or cherry. Taste and smell have this remarkable way of interacting together to bring you this thing that we appreciate as humans, which is this concept of flavor. But way, way before we were interested in flavor and even just the wonderful nuances of taste and smell individually, these senses were inner bodies to protect us from danger. So the primordial purpose of taste and smell is to alert us to incoming pathogens and dangers and also to alert us to nutrition. So this is why babies drink breast milk because it tastes sweet and maybe even a little bit salty and those are nutrients that we need. But it's also why a baby says, "Mm-mm-mm-mm, when you try to feed them a bitter vegetable because they are prepared from birth, probably before birth, to know that that could be an incoming danger." So someone with smell loss and taste loss is pretty unlikely to be able to detect natural gas in their home and spoiled food in their refrigerator and perhaps something that they would be drinking or eating that might be poisonous. Do you see smell loss as a disability? You know, it's really interesting. In preparation for today, I recalled when I started at Monauts almost exactly eight years ago today, which seems unreal. But one of the very first things that I did was I applied to a contest that the Chronicle Philanthropy was holding. And they called for applications from across the country from non-profit organizations and the winner was going to have a website developed for them. And you know, the Monauts Center won. And it was kind of this tremendous thing because the reviewers had, you know, no previous experience with smell loss. And so it told us that the work we were doing was really important. And as a result, they produced for us a lovely website, an educational website. And the website, when we launched it, was called Imagine Life Without Smell. And it took quite some time after we launched it to realize that we had put together some really great educational materials about smell loss. But we were asking people with smell loss to imagine life without smell. They already knew what life without smell was. In other words, we had totally missed the mark because we were approaching our work from this very perspective of people who are nor masmack, who can smell. And so when you ask me this question, I think about this story because I think that over these last eight years, I've completely transitioned. And I've gained some ability, not complete ability, to really look at people and look at the world from this perspective that we have different sensory abilities. So I kind of think my answer is no, it's not necessarily a disability, but we all, and now 9 million plus people will have very different sensory abilities. New people will have very different sensory abilities than the person sitting next to them. And so I am really training myself to sort of approach life in this way is to accept the fact that people smell and taste differently. And to try not to think of being nor masmack as the norm. I was trying to come up with a visual for how many people are dealing with smell loss and dysfunction. I was thinking of like a city bus with all the seats full, what fraction of the passengers are affected. Now it's interesting that you bring that up because just last night in a meeting we were looking at the statistics and there are not good statistics on smell loss existing. So the last deep survey of smell and taste loss was 2013. And so, you know, we are actually entering this public health, yes, crisis without a very good baseline of who pre-pandemic experience smell loss and who didn't. who didn't. So it is really terribly important that we build smell tests and eventually taste tests that are rapid and inexpensive and can be used regularly to monitor our baseline. What a good second to Sentinel. Can you tell us about that? Sure. Sentinel is a rapid smell test that's in development at the Monal Center. The two leads on the project are Pamela Dalton and Valentina Parma. Sentinel is being validated as a rapid smell test. So right now, smell tests are rather expensive and take a long time to administer. And the idea here is that we'd be able to have a fairly simple card or another mechanism that doctors can easily use in their offices to do an individual check. Being tested for smell is part of a regular checkup as you would your hearing or vision is not really at this time common, right? Yeah, that's right. That's absolutely right. I know there are some organizations that you're working in partnership with, right? At Monal. Before we even talk about some of the other organizations you're working with, I want to talk about the recent change of the name from the Monal and ask me a project to smell for life. Similarly, story when we were developing this campaign, we called it the Monal and Nazmiya project. It's been a good and helpful name over the course of many years. But when the New York Times cover magazine cover article came out in January, I did a lot of thinking. We, in essence, sort of exploded at Monal. I mean, you can imagine that it's been an incredibly busy 15 months. But what happened after the magazine article came out was rather unbelievable. There's hundreds of people calling and joining our maleist and emailing, you know, sort of coming out of the woodwork with all of their existing smell and taste issues. And of course, people with COVID-induced smell and taste loss. And we were still very much in quarantine. And so one morning I said on my couch and I just thought for probably two hours, a sort of time that I really afford myself. But I thought and I thought and I thought, you know, this is a completely defining moment for taste and smell. Everything just now, everything changed. And I allowed myself a moment to do some writing and to think about what that meant for Monal. Definitely a moment that came out of a lot of, you know, introspection and, you know, with the right combination of collegiality, you know, just completely came together for us. That's amazing. And this is a very transitional time for everybody. So smell for life, can you explain a little bit about what that is? Sure. So smell for life is an educational and fun raising effort. And so in short, we're looking to raise lines to support Anasmea research and to raise awareness. And the two things naturally go hand in hand. But the person who really set us down this road is an individual who experienced smell loss and found Monal and actually came to Monal and began working and supporting a study looking at causes and treatments for smell loss. And when he made his first gift, he asked us distinctly to do educational outrage. And it was in fact that wish of his that led me to apply to this contest to develop this scrolling website. And, but we continued our efforts over the years in a whole variety of ways, including participating in Anasmea Awareness Day, had conferences, we've had smell trainings, we've had lectures and panel discussions. So it's a very sort of integrative effort to reach and coalesce people who don't smell and taste. And to let them know that there is a community surrounding them of allies looking for causes and potential treatments. And we know that we have built this community in part because we have a list of people who have come together through Monal and because of our in-person and now remote events. From those efforts actually grew the formation of the Smell and Taste Association of North America, Stana, which is North America's first patient advocacy group for Taste and Smell disorders. And so it's been a kind of amazing voyage, I would say. You know, many of our efforts are still nascent, but it is amazing to see what can happen when you convene people under a sort of shared vision for what they want to do. So we've seen individuals come forward and become leaders and voices right before our eyes, right before our noses. My first introduction to the need for patient advocacy and fellowship for people with smell loss was at the ITTSD conference identifying treatments for Taste and Smell Disorders at Monal in late 2018. I didn't know about that until I witnessed a room full of people who had lost their sense of smell and some were born without it and some had dysfunctions like Porosmia passing the mic and sharing their stories about the difficulties of getting answers for their conditions and how hard they had to work to get information and to get people to take them seriously. That's also where I met several leaders in the Ennasmite community including Chrissy Kelly who runs absent, which is one of the organizations that Monal partners with. Well, there were two people who really emerged shortly after we started our campaign as really important guiding stars and they were Chrissy Kelly and Daniel Shine. So Daniel coined Ennasmite Awareness Day and Chrissy of course started the sort of lay advocate version of smell training. You know, from the beginning we started working with these types of people because they were really interested in the research. You know that they wanted, you know, to educate themselves and others. Yes, we've worked, you know, very closely over the years with absent, watch them grow and change with fifth sense with Ennasmia Awareness, you know, with the multitude of chefs, Somalia's, you know, beer makers who have come to us, you know, with, you know, these sensory losses looking for some answers. And now with Stanna and the idea is global awareness and on an individual country by country level advocacy for funding for more research. The field is still very young and I spend a lot of time with scientists and I learn from them and I sometimes distill from them into very easily understandable at least for me nuggets. So, you know, the example I like to give about where we are in this field is comparing vision and smell. And we did this as a sort of framework for the ITTSD conference was tried to learn from our colleagues and other senses. But to break it down into the most simple terms, there were sort of three things that we needed to understand in order to make colors easily accessible to us and to digitize them and to reproduce them. And for for smell, there's 400 things we're trying to understand. And so this is sort of how I place it into context. You know, the reason that smell, lags behind in research to some degree has to do with the complexity of the problem. And many of us are trying to understand and decoded and and and understand all, you know, the whole functioning of all the receptors and why so many of us don't share the same ways of smelling and tasting things. And this process is taking us a little bit longer and without a really engaged group of patients, it probably prolonged the problem. And so now, I think that's sort of the other part of the defining moment is that we've had this pandemic where the world became aware of these senses. And we now have a much more active group of patients who are screaming and yelling about it. And it would not have gotten the attention of the New York Times where it not for those patients. So what Chris and Daniel and Duncan started, you know, is really growing in this incredibly meaningful and timely way right now. We talked a little bit earlier about the health ramifications of smell loss, but you know, I had only really scratched the surface. I talked to a new mother who had had COVID and and then had a baby. So she can't smell her newborn baby. And that's a pretty powerful reality for anyone. in terms of bonding. But there are many, many other stories of social isolation and depression. And we do have some research out of Monal that shows that a person's social circle can be smaller when they don't have a sense of smell. It is difficult to build a position of empathy, especially when the sense of smell is not as appreciated as hearing or eyesight, typically. Joel mainland at Monal has often said that we don't in Western countries don't particularly trust our sense of smell. What is your favorite thing about your role? I've had a huge opportunity to learn a lot for my colleagues. What I've found really rewarding are the times when I've been able to take the concepts and translate them for more lay audiences in a whole variety of ways. I do like being an ally. The combination of learning about this disorder when people can't smell and then really learning about people's personal stories have really propelled me to believe in the research and to believe in the cause of understanding the causes and the potential treatments. So when we talk about fundraising for smell loss, it all feels very natural. That's what we should be doing. And the pandemic, of course, then creates this need to think about the future state. And we talked about Sentinel and Yes, it grew out of the pandemic. But Sentinel is really a tool that will outlive this pandemic. We may have other viral threats. And Sentinel can be helpful there. Smell loss can be an early symptom of neurological diseases. And so the ability for clinicians to be able to track this could very well change or contribute to their ability to diagnose and even treat neurological diseases. So what is your smell vision for the future? It is the day when you're offered a smell test in your doctor's office as part of your physical, yeah. One day you'll have Jill mainland on this podcast. I've mentioned him so many times. He has often said to me, we just simply have no idea what it will mean when we digitize orders. It will change our world so dramatically that we just can't even imagine what it's going to be like. So a paraphrase, his smell vision. Exciting. Our smell mail question is, what would you say to someone who has just lost their sense of smell? I do this all the time. I would say, please go to the GCCR and take their surveys. I would say, join our mail list and learn about smelling taste from the experts. I would tell them to consider smell training right away and to visit absent.org to learn about smell training. And I might recommend that they have a conversation with their ENT about their smell loss to see if there is anything else that the doctor should be looking at. And of course, I'd ask them to make a contribution to Monal. Hey, what about a tip? Perhaps I've already touched on it. And perhaps the tip is to appreciate what you have when you have the ability and maybe the disability and to try to dig deeper and appreciate all of your and everyone else's sensory differences. Beautiful. OK, shameless plug. My shameless plug. Oh, I think I've already covered my shameless plug. Please visit the Monal website, m-o-n-e-l-l.org. Take a look at Smell for Life. Take a look at all of our research, join our mail list, and consider a contribution. Thank you. I really thank you for having me. Smell yeah. Welcome to the Smell Yeah podcast. Hi. Thank you so much for inviting me. Thanks for being here. So Dr. Daniel Reed, you are the associate director for the Monal Chemical Senses Center. And you also run your own lab that looks at the differences in smell and taste perception between people based on genetics, correct? Yeah, that's right. So my lab is really interested in what we call individual differences, which basically just means how people are different and what they taste and what they smell. Cool. So I wanted to talk today about the GCCR, the global consortium of chemosensory research with you, because you were actually my first avenue into it. I reached out to you because I had seen smell loss being reported as a COVID side effect. And I wondered what was going on. And you put me on to Twitter, which then led to me going to a Slack channel for the birth of the GCCR. Oh, well, I'm glad that I led the way to the GCCR. That's the global consortium for chemosensory research, which is a mouthful. But it's essentially a group of scientists that came together to study that exact question. In the beginning, no one knew if the smell thing was really true or not. And of course, people that study smell as their way of life were pretty skeptical, because smell loss is something that happens a lot when people are sick, because their noses are blocked. And so we didn't know in the beginning if this was really a genuine smell loss, or if this was just secondary to having a stuffy nose. And at what point did you start to realize, or did the scientists involved, start to realize that this was definitely part of the big picture? Yeah. So there's two ways that it really I understood that this was something unusual. So the one way is sort of the scientific way. I knew what the rates of smell loss were for ordinary colds and flu, and the data were teaching us that the amount of smell loss is much greater than that. So that's sort of the data, that's sort of the head part of the equation. But it really made-- became clear to me kind of in my heart-- when I was listening to an individual person talk about what happened to them, that common story of I went to bed at night normal, and I woke up in the morning, and I couldn't smell my shampoo, and I couldn't smell my coffee, and I couldn't taste my muffin. And it was this overnight complete loss. And in the absence of having a stuffy nose, so as she was describing this to me, I'm like, oh, yeah. OK, this is different. So that was sort of the heart moment. Right, where it really clicked all the way for you. Did you share that moment with other members of the GCCR, or at that point where things started to kind of take a turn away from skepticism and towards, this is really real? I think every single scientist had that moment, that Dan and Moire moment of like, oh, wow, this is really different at different times and for different reasons. But it was very clear that the mood shifted. The mood of like, intense skepticism to like that sort of holy Moses moment of like, yeah, this is really a thing. This is really a cardinal feature of COVID-19. And I would say that that really shifted in the mid to late part of March, is that as we were hearing more and more, and then we started collecting the data. The data were just super clear. So once we started in April collecting information, I think almost every scientist was one over. And where was the data coming from at that point in time? The data were coming through a web-based survey that we put together. So really, literally, people from all over the country, all over the world, were contributed to this online survey. And I remember when we, all of the people were contributing and figuring out how to ask questions about smell online and all the different languages. So we had all this team of translators translating. And so the data were actually coming through the internet-based survey. So I can remember like when we first turned this survey on, we were like, all like, what's going to happen? Is anybody going to take the survey? Is it going to be so much interest that it's going to crash? So there was a lot of excitement at that moment that we just turned the survey on for the first day. Can we talk a little bit about what that first survey looked like? What were the data you were trying to gather at that point? What were the big questions? Yeah. So well, the biggest question in the minds of the scientist was, is this something different than ordinary cold and flu? So the goal was, as we wanted to get people with ordinary cold and flu versus people that had diagnosed COVID. And then the early days, that was hard, because you couldn't get a PCR test in the beginning. You didn't-- it wasn't any. So trying to get people that had PCR-based testing, so we really tried to get those people that were COVID positive. And then we were comparing. We were asking them, just simple questions, like on a scale from one to 10, how would you rate your sense of smell? Simple question, it's like the pain scale, you know, if you've ever been in the hospital, you know, they'll often ask, and nurses and docs will often ask you rate your pain on a scale from zero to 10, and you, you know, say whatever it is. So it's the same theory with the old factions, with the smell. Now, as scientists, we are a whole lot happier when we can give somebody something to smell and then ask them to rate the thing, but we couldn't do that during the pandemic. So we were just simply asking people to rate their sense of smell as they remembered it before they got sick, and then while they were sick. - Next, okay, so that was the first test, and then since then we have another test that's come out right from the GCCR. - Right, so the philosophy is the same. We really wanna get people in an inter-bett net-based survey all over the world, but we probably want them to smell specific things and taste specific things. And so this is the so-called home test, and this is the idea where you go and you get, you know, of coffee grounds or tea leaves for bitter and some salt for salty and pick something to smell your favorite beverage, and to taste those things, you can smell those things and then report back. And the thing that's nice about this is you also get feedback. If you take the test more than once, you can see if your taste and smell is changing. So for instance, are you getting better? Are you getting worse? You know, this is an easy thing that people can do to just see what's going on with their sense of taste and smell, doesn't require them to come into the doctor's office or come into the research lab. They can do it easily from home. - Right, okay, so to give a little bit of the background for the GCCR, we understand how it was established. What is the diversity or scope looking like right now? I think at this point, we're over 700 members, right? Or close to 700. - That's right, and you know, I think over 60 countries by now. Yeah, it's been really fascinating because the thing that's been the least challenging has been people getting along and being constructive, and it's really been a real pleasure to get to know people from all over the world and see people just work collaboratively. That's a lot easier than I would have thought if I'd going into this. The only thing that's really tough is trying to find a time when everybody's awake. (laughs) Since many of our collaborators are living in an Australian, Singapore, in Japan, in Korea, you know, trying to find a meeting time that's fair to everybody as nearly impossible. So somebody's always getting up earlier, state up late. One of my questions for you is about the Open Science setup for this. Can I have you define Open Science? - Right, so Open Science has two components. One is that before you collect your data, you specify exactly what you think is your testing, what you think you're going to find, and how you're going to analyze your data. Are you going to kick out certain data because it doesn't, you know, doesn't meet certain standards. You think about that stuff really carefully beforehand. So that's the first part. And then the second part of Open Science is that once you do all of that, then you make all of your data in a way that's not identifying individual people. We call that de-identified data. So all your data, all your statistical analysis, all of that stuff, you put that in the public domain so that people can repeat your work exactly. They take your raw data with all the warts and knobs and all the problems with it, you know, 'cause real people give real data and there's missing pieces and so forth, and that they can exactly recreate what you did. - Is this your first experience participating in Open Science? - No, so my laboratories actually very heavy into the Open Science, we're big fans of the Center for Open Science, which is a nonprofit that's really charged with this. So we had done what's called pre-registration, which is essentially where you lay your cards out on the table before you collect the data, say, "Here's what we're doing, here's what we think we're gonna find." It's basically like trying to predict the future and seeing how you match up or you don't match up. So I actually am a very keen Open Scientist, but GCCR, we require it. So that's the difference. - Do you think that's a departure from typical smell and taste research outside of the Monal Center? - Huge departure, huge departure. It's a very unusual thing to do in some types of research, to be very, very clear on exactly what you're gonna do once you collect the data and exactly what you think you're gonna find. Because sometimes we obviously approach with a hypothesis, but there's a lot of nuances that we don't think about or we can anticipate. And so it's a very novel thing for the field of taste and smell and for science in general, but something that's been enormously rewarding. We like to say that this Open Science practice is a gift you give yourself, because you really put a lot of the work before you collect the data rather than be scratching your head after you collect the data. - So we've covered why it's a big departure. I also was hoping you could talk about the significance of publishing papers. - Oh sure. So publishing papers is basically the bread and butter, the meat and drink of science, right? Because it's not science until you communicate what you know and learn, right? You can shout Eureka in the lab all day long, but if you don't let other people know, you haven't really fulfilled your mission in science. So publication is basically scientists write out what they did and what they found, and then they give it to other scientists to read and critique, that's called peer review. And that's a very important part of science. Now in like the arts and their attainment, this might be called getting notes, right? You get feedback about your work. And then oftentimes scientists, people don't necessarily realize that, but they take those comments very seriously, and they often go back and they redo parts of their experiments to address those comments. And then that work together goes through often another sort of form of review by the people who run the journal, that's called an editorial review. And when it's finally, everybody's happy, then it's published. So that means that it's usually free and available to all. Although some journals are freely available and some journals are not. - Beautiful. Do you share with us what the mission is of the GCCR? - So our job is to understand taste and smell worldwide as a science and a discipline. So right now we're all about COVID-19 and taste and smell loss. But we really view our mission as beyond those borders and beyond that scope. So one thing we've been thinking about doing is studying the worldwide differences in sweet preference. So looking to see if people, some people have a sweet tooth, some people don't. And wouldn't it be interesting to know if that varies worldwide? - It's exciting. What are some of the other goals for moving forward for the GCCR? - The big goal right at the moment, like our medium term goal, is we absolutely have to know two things. We need to know the scope of recovery after COVID-19. We really need to understand who gets better and how fast. And so right now it's looking like about 10% of people that lose their sense of taste and smell maybe 15% at the end of a year are not better and maybe even slightly worse. So that's what the data teaching us right this minute. But we must know more about this. Will these people eventually get better? We don't know and we must know. And of course the second thing that's very important right now is treatment, right? Because there's really no super effective treatment for taste and smell loss. Smell training is helpful, but it's not a magic bullet. And so one of the things we really want to understand is why does it happen and how can we reverse it? So those are the two extremely important issues. But I would also say more broadly, a lot of people are shocked that taste and smell are never measured in the doctor's office. So even though taste loss and smell loss in particular is predictive of a lot of neurological diseases, it's really important to know. It's like knowing about vision and hearing. So I guess a very broad goal for the GCCR would be to make those smell and taste tests easily accessible as a part of routine medical care. What are the biggest challenges you're coming up against? Time. Our biggest challenge is time. Most of us are really excited about being in the GCCR and we have a lot of new and important research questions. But we still have old, important research questions. So I have a lot of things that I was studying prior to COVID. So a lot of our GCCR scientists are not getting a lot of sleep. [LAUGHS] What's the most surprising thing you've learned from the data collected by the GCCR? Or your experience with the GCCR? You can answer that, however. The really, the most shocking thing that I learned is the prevalence of these dismal distortions. So we could-- call that prerosmia. So it doesn't smell like it's supposed to smell. And I did not understand what an important feature of an important feature prerosmia is to COVID-19. I did not understand that until I started seeing those data. So that's definitely the biggest shocker. And then, as I said at a human level, the biggest shocker is just seeing how well people when they're highly motivated can work together. You know, that's been the beauty of the GCCR. Like, I've met people that I never would have met. I've seen people that normally maybe don't get along so well, get along beautifully. There's just a lot of spirit of cooperation that's been really beautiful. And that maybe I'm cynical, but that surprises me, but it's been a beautiful surprise. That's wonderful. And it's to everybody's benefit, right? Yeah, it's really everybody has benefited from it. And you can see that in so many different ways. You know, there's just a lot of there's just a lot of scientific conversation going on. And that that's really just been amazing. Did I ask you already about the papers that the GCCR has published? You didn't, but I'm happy to talk about them. So the GCCR has published two papers. So the first paper was really just gluing the groundwork for what does this what does this look like? You know, who's losing their sense of taste and smell? What's their diagnosis? In the beginning, we just we didn't have enough people that had actual PCR-based diagnosis. So we were asking if you were diagnosed by your doctor without a PCR test, is that the same as with a PCR test? Turns out it was. But then the second question we published on that was really the important question, which is is COVID-19 different than ordinary colds and flu? And we showed not only, yeah, it's different, but we also showed that smell loss is the single best predictor of whether you have COVID-19 in the absence of PCR testing. So if you can only ask people one question to try to diagnose COVID in the absence of PCR-based testing or other types of testing, you only can ask one question, have you recently lost your sense of smell? Is this leading to people hoping for a smell diagnostic test in place of getting your temperature? Yes, well we certainly would like to see that. We've developed a cute like post-card test for smell loss. We would like to see that rather than the temperature testing for sure. That's a dream that we have. You know, whether we'll see that when you go to to screen to get into places, I don't know what's going to happen. I think there's a lot of different things unfolding right now about how we're going to handle large crowds and that type of thing. Right. What's your smell vision for the future? My smell vision is that every doctor's office visit, you'll be sniffing a little bit of something and rating it so that we have a record of your sense of smell and hopefully of taste just like we have a record of your blood pressure and your weight. So that's one dream that I have. That's my smell vision. And my other smell vision is that we would get a tsunami of funding for our research to try to treat smell and taste loss. So I would really like to see sort of a war on smell and taste loss level funding to try to answer the questions of what's gone wrong and how can we fix it? Nice. Okay. Our smell mail question from the audience is how can I join the GCCR? Very easy, totally free. If you just go to the GCCR website, you fill out a few simple web forms and you're in and you have access to our SWAC channel and can keep abreast of things. We always need people that are very strong in community building skills, data analysis skills and people that just have good judgment about what's important and what's not important to study. Great. A tip for the audience. A tip for the audience pay attention. So in that morning, your shampoo in your hair, smell your shampoo and just remark on what it smells like. Smell your coffee and make a little mental bookmark of what it smells like. And that way, if God forbid, you wake up that one morning and you don't know what's going on, you'll have some sort of mental reference to see if you're losing your sense of taste and smell. So pay attention is my tip for the day. Great. And a shameless plug. Shameless plug, my institution. So the Monal Chemical Census Center is a mouthful, just like the GCCR is a mouthful. Monal was the name of the person who originally donated the money. And then chemical senses just means your ability to have sense chemicals, taste and smell. That's all it is. And we're a non-profit research center located in Philadelphia. We welcome visitors appropriately masked at this moment, but we absolutely would welcome people in your interest and we're happy to put you on the mailing list and keep you in the know with the latest news. Great. Thank you so much for being here. Oh, it's my pleasure. Smell yeah. Katie Boateng, welcome to the Smell Yeah podcast. Thank you so much for having me. It's a great to have another fellow podcaster who's focusing on smell. Thanks. I'm new to the game, but you are a longtime vet and you and I actually met at a smell and taste conference, right, in 2018. Through the Monal Center, the Rocky Mountain Center for Smell and Taste and the University of Florida Center for Smell and Taste, I think they all kind of collaborated together and created a conference for us. I was just really excited to be at Monal. So I was very surprised to also learn about the advocacy aspect of smell loss. That's kind of where you come into the picture. Yeah, definitely. So the conference was also the first time that I had ever met anyone in person who has an auspania. So I became an auspice myself like back in 2008, 2008, early 2009. Due to my best guess of an upper respiratory viral infection, so post viral, but long before COVID. So if you say that nowadays, people will think automatically COVID. So at that time, there was not a lot of resources that were available online. Fifth sense and absent both awesome organizations focused on smell and taste disorder as based in the UK didn't exist yet. Facebook was around and I was on Facebook, but they were not all of the different awesome groups that there are today like the patient support groups. So really, I kind of just fumbled around by myself for quite a long time. And then my husband and I actually moved to New Jersey from Idaho where I'm from originally in 2018 in June. And I found out about Monal and this conference that was happening in November and I was like, well now that I live in New Jersey, I can just go to Philadelphia really easily. So went to the conference and like I mentioned before, it was the first time that I actually met anyone else in person who had an auspia. And there's just something really special about that moment when you meet someone who completely understands you without having to explain yourself. Because a lot of the times when you try to explain the situation to people who do have a sense of smell, they don't quite understand. It's incomprehensible. A lot of the times because it doesn't make sense until you've experienced it. So there's just something that was really special about that moment where I got to meet other people and people who cared, advocates for smell, even if they could smell themselves as well. And it was just like a really cool conference. But to your point, yes, it was identified there at the conference that there's a really large lack of awareness about what patients need. And that was one of the things that was identified at that conference is the need for patient advocacy and patient groups. It was really incredible to watch. So your podcast you started in June of 2018, is that correct? Actually started in August. So we moved over here in June and then I was job hunting for a while. It's really difficult to find a job out of state when you don't have an in-state address yet. So when we first got here and we had an address, I was really job hunting, an earnest, and doing interviews and things like that. And so I had some time away from work from June until September. So I was looking for work in between that time. And I'm not a person who does very well at being idle. I'm like to make lists and do things. So I was like, what should I do? I should make a podcast because there was no resource like that, which I kind of explained where did the podcast idea come from. I'm a really big fan of podcasts. Some of my favorites are like my favorite murder or stuff you should know. Listened for a really long time. And so when I was thinking about a project for Anosmia and like what would be great for the community, I like to think about like what would I have needed at that time. And so back in 2009, I would have been really cool to have a resource like a podcast to listen to. So I decided to create one. Had no idea how to do a podcast. So it was a lot of trial and error. So just learning how to do things like audio editing, interviewing, stuff like that. And it really started in August of that year. And this year, obviously, it's going to be three years already, which is pretty fantastic. And we're up to 92 episodes now. And it's just been phenomenal to speak to people who have smell and taste disorders. And also scientists, clinicians, and other interested people who are in that arena as well. Are there any episodes that really like stick out to you as as you're looking back. Um, so Pre-COVID, I didn't interview with a lady named Shantelle Mitchell and she has Prosmia and before COVID, Prosmia wasn't as well known. Like I was aware that it was a thing because being in the world of Smell and Taste you learn the different names for the different disorders but I'd never spoken to anyone who had experienced Prosmia. So I spoke with Shantelle and I believe she's based in New Zealand. I'm pretty short in New Zealand or Australia. I'm sorry, Shantelle if you're listening. I think it's New Zealand though. And she was just describing the major impact that having that had on her life and it was just horrific. Like I after that conversation with her considered myself lucky that I didn't have any sense of smell because I am completely an ozmic still. I don't have any ability to perceive smells and just the way that she described that and the impact that it had on like her mental health her day-to-day life. I believe that she was dealing with Prosmia while she was also pregnant and like losing a ton of weight even though she was pregnant and having a child and just she couldn't eat anything. And I just remember that episode it just sticks out to me so much because I was like wow this is a really big problem and there's not a lot of resources out there in the world. And try to explain that pre-COVID that everything is just wrong. Like it smells wrong, it tastes wrong, you can't eat anything and a lot of people didn't understand. So like what are you talking about? Like what do you mean you can't? It's wrong like the smells are weird. It's almost easier to just understand that you don't have a sense of smell I think. So yeah that episode sticks out to me quite a lot. It just again reminded me of the need for advocacy for patients all over the world. Why do you think there is such a need for advocacy? I think because smell and taste loss are invisible disabilities that they are not well recognized. So if I had something and I talk about this quite a lot with guests who come on the smell podcast but if I had something physically wrong that you could visually see then you would my assumption and what I think we do in society is that we're a little bit more aware of it and we're like oh that person has a physical disability they need a wheelchair or they have a cane or you can clearly see that they can't see or they cannot hear because they're using sign language or they have a walking stick so there are clues. So I think with smell and taste disorders there's no clue really. There's no sign on me or no visual symbol that you can tell that there's some like really debilitating issue that I'm dealing with and so I think that's why smell and taste loss haven't been well advocated for in the past and again it's kind of hard to explain to people the major impacts that it can have on your life especially like mental health and the big proponent of talking about mental health and how it can affect you and seeking help and treatment if people are ready for that because it can be debilitating like back to shantill's story like she couldn't eat anything and was just like severely like upset about that and unhealthy and but again if you were interacting with her you wouldn't necessarily know there's anything wrong so right yeah just kind of to that point it's it's important because you can't see it and do you consider smell loss and taste loss disabilities I do yeah because it's a sense that you no longer have so one of the disability definitions that I've seen a lot within the last year or so just looking online is it's like when a major function of your life is missing and so those are two major functions of your life and so I do personally consider it a disability it's an invisible one but what's interesting to me being in this community is that that is a device of opinion some people do not agree with me at all which is a hundred percent fine I actually really enjoy having that conversation it's a question I ask on every podcast episode is if you consider smell and taste loss of disability or not because a lot of times the word itself is triggering for people they think that if you claim that you have a disability that you are saying that you need like a parking sticker for a parking spot or something like that and I think we need to change that conversation to just because I'm saying that I have a disability doesn't mean that I necessarily need anything and I don't think we have to play like comparative disability game where like minus as worse as yours or yours is better than mine like I don't know why we automatically go there again when you say like I think that I have a disability a lot of people will say like well you don't need a wheelchair or you don't need like a cane or whatever and I'm like no that's you're right I don't I'm grateful that I don't but just because mine's different doesn't mean that it's better or worse so I think that's a conversation that's needed interesting do you feel like there's one thing or a couple like really strong things that people who are newly a nozmic need I think people who are new to having an austria need people to speak to it's that understanding piece like a guide I just remember having such a sense of isolation and loss like going through the grieving process because I lost my smell and my ability to personally flavors at the same time a long time ago now so now I'm used to it but I just remember the time is just very isolating because no one understood what I was talking about your family members and your friends love you and they care for you and they'll like commit straight with you but unless they've experienced it themselves are like a really paying attention to what you're saying it's really difficult to comprehend how big of a loss this is for some people and I don't speak for everyone because some people are like it's fine I'd not that big of a deal to me which is sort of like a valid experience too but for me it was a big deal and I just remember being so alone and really at that time I just kind of put my nozmia in a box and like package did up put it away and like didn't want to talk about it or deal with it for a long time because it was too painful to like unpackage and like process so I think what newly inausmic people need is fellowship they just need someone to be able to talk to or to reach out to and what's great now is that that's easily accessible on social media if you just search for the hashtags like an awesome you know pros me a fan toss me all the different hashtags you'll see so many different pages that have popped up within the last few years that you can go and like just say like hey I'm dealing with this thing and then have someone to talk to and I actually really enjoy those messages from people they just say like oh I found your podcast and I've been listening and I'm this I'm new to this and etc etc and I always write back because I want them to know like that's the one of the major goals of the smell podcast is that people know that they're not alone you've interviewed so many people I'm wondering if if the processing dealing with it journey is really different yeah I think it is obviously I think and I'm not just I call that a story like that but I think that people typically go through the grieving process in a way like the bargain denial anger all that good stuff I I hear those kinds of things when I speak to people like where they're at in their different journey but yeah some people seem to think that having this is not a big problem it's just like a unique or quirky thing like that you might share at the office like what's a fun fact about yourself you know those right ice breaker games they make you do and for some people it's devastating like it's a really big problem and that's all that they can focus on so I think it just depends on the individual and the way that they related to their sense of smell and taste beforehand I think when people are new like they are new to having this non-taste disorder it's mostly shock like I cannot believe this is a thing because it is it's like I didn't know you could lose your sense of taste or I didn't know you could lose your smell and and that I would impact your like ability to perceive flavors and stuff like that so I think a lot of people are shocked at first I was I was like this isn't really this is gonna go away it's fine like a little bit a month or so and then I'll get it back and it's what are we 2021 so it's been 12 years now it's not back so I think that's hard to for some people because it's a waiting game and a hoping game and you do your best and you and you hope in you really want to get it back and then sometimes that we'll come back which is fantastic and then other times it's just gone for some people which is really like heartbreaking for people who have just come into Anasmia is there a message you would want to relate to them yes I would recommend seeking out like reputable resources so based on where you are in the world you might have like a patient association near to you and if not then all of them are still good like just because you live in a certain country, those of me you can't look at their resources on a website. So some of those that I've mentioned before are like fifths and absent, both based in the UK. And then also Santa. So Santa stands for the Smell and Taste Association of North America. And we actually started that. I'm president of Santa as of last year. We started at meeting in May of 2020 and have recently filed for non-profit status. And so that's really exciting. We're just waiting on that. That's all pending. But we're actually in partnership. Some of our founding advisors are from the Monel Center and the National Institutes of Health. And then a few of us have an else in the ourselves. So Santa is a newly formed group. That's just getting its legs underneath it. But we're starting to do some things and have some exciting opportunities coming up. But we hope to provide for Santa at least some fellowship opportunities. Like I was mentioning on Instagram or Facebook, where people can kind of just join and ask questions from different people that we bring on. So look forward to that. But kind of just back to your main question is reach out and find reputable resources. And I do say reputable because just be cautious of the information that you read on websites, like Facebook groups and things like that. Just take everything with a large bucket of salt on some of the things that I see there. But just because one person recommends like a treatment that may have worked for them doesn't necessarily mean that it would work for you. I would say probably like the established patient organizations are like a really great place to start. And then there's Facebook groups online support groups that are there just groups themselves. They're not a patient organization, but they can be fantastic. So just be aware. Again, I kind of keep saying that. Just be cautious of the information. If someone is like trying to sell you something or like just telling you that this is the number one cure, it's going to fix everything. And you'll never have any problems again. Just be a little aware of that. But there's a lot of the groups that, again, that fellowship piece is just key. And you can get that fellowship piece in a lot of the different Facebook groups, even if they're not a patient group. Do you know what I mean? If you are new to smell loss and you're at the doctor's office, are there any things that you would recommend people ask their doctors about in the diagnosis or checkup process anywhere in the early stages so that they can advocate for themselves in a medical setting? Yes, I think that in a medical setting, sometimes it can be difficult because you're based on where you are. Your person, your doctor, or your practitioner may not be familiar with an osmia and smelta sorters. There's actually not a lot of education provided to doctors in medical school about this. I think it's pretty short. Maybe like a chapter or something. I don't. It's my understanding as well. Don't give up if you feel like you want to keep going. So what I mean by that, so I started with a family doctor who prescribed nasal steroids and that didn't work. And then I could have stopped there. But to myself, I thought, I don't-- I don't want to stop there. I want to keep going and figure out what's the issue. So I went back to the family doctor and said these nasal steroids are not working. What's next? And so asking for a referral to a new nose and throat specialist so that you can check you, do the video up your nose, look for polyps, other issues that might be causing your problem. And that could have been the end of it right there because there was no polyps and anything like that. So it's just kind of like-- you don't have polyps. Great. So that could have been the end of it. But for me, I was thinking like, hmm, so what comes next kind of? So then I was referred from the ENT to a neurologist to check for any brain-related issues like tumors, which could be a really big problem or neurological damage, just different things like that. And there was no issues there either. And so kind of that was the end of the journey for me at that time. But that could have stopped at the family doctor. Right. Just keep going if you feel like you're probing. Yeah, keep asking questions and seeing if it could be this or that. Nowadays, depending on what happened to you or how you became an ozmic or a prosmic or whatever, there could be other issues-- there could be other-- I don't know if the word is treatment, but there could be other things that you could do, like, smell training to see if that could potentially help you. And I didn't know about that in 2009. So at the end of the neurologist journey, I just kind of like stopped. But like, that could help you potentially based on what the issue is. And then if you don't want to do smell training or maybe however you became an ozmic, that won't work for you. There's other treatment options. Like, again, back to my mental health kick. You could go to therapy and talk about it, journal, write about it. Those kinds of things can be really helpful. So just advocate for yourself from the start and keep going. And then I think, obviously, there's a point where you have to come to the acceptance piece of this is probably it and accept it. Or maybe you don't have to. I don't know. I did personally. And it's been 12 years without a recovery, which I think really bummed some people out when I talked to them, because they want a happy ending. But I do think just joining this community and having the podcast and continuing to have these conversations is a good, happy ending for my story. I don't feel horrible about not having a sense of smell, because it led me to all of this. That's cool. What's eating like for you these days? So I'm very like textur-based, texture-oriented. I like the same types of foods. So things that are crunchy, obviously, things that are bland or smushy are a no-go. So overly ripe bananas are just horrific, unless you put them in a smoothie. I cannot eat a super ripe banana by itself. It's the worst. But a fresh banana is OK, because it's still kind of firm. But yeah, I'm very-- I don't really focus on my food that much, if that makes sense. In my life, my husband is more. The person who makes sure that we have healthy food options in our home, because I would just be happy with a sandwich or a bag of chips all the time. So it is important if you do have a smell and taste disorder, it is important to be aware of your nutrition and try to not always eat your favorite bag of salt and vinegar or potato chips all the time. You're married. So are there any things that your partner has done that have made your a nausea journey easier? Yeah, so there's this term on in the analysis community that floats around with the designated nose, like having someone who can help you smell stuff. And that's really important. So he's just, like, my, I guess, sounding board, but smelling board. I don't know if that's the thing. So I go to him for anything like, is this shirt clean? Can I wear this again? And then he'll just point out things if the trash can stinks and it needs to be washed out or things like that. So yeah, he's around to just double check the food that I eat and those types of things. It's very helpful. And for people who may be in the very early phases of an nausea who are maybe in, you know, more emotionally strong parts of it, are there any things you would recommend for their partners or loved ones to do to be supportive? Yes, that's a great question. I think taking it seriously is really important. Back to what we were talking about earlier, I think because it's really incomprehensible for someone who hasn't experienced it. If you might say, like, oh, like, it's not that big of a deal. It's a really big deal for some people. It can be a really big problem. So just like taking it very seriously and maybe sitting with it and listening to what your partner is saying to you, like, this is hard, this is sad, this is frustrating. And just being there to kind of like process through those emotions with them, I think is really important. Try to remember that's the number one frustrating thing to me is like even some family members will still forget and it's been 12 years. And I'm like, can you, it doesn't hurt me anymore, but it annoys me. I was just speaking to someone and it's gonna be a podcast episode, Charlie, she runs a Smell You Never on social media. So she was talking a little bit about how she's congenital. So she's never had a sense of smell. And she's still as people in her life who will buy her like smelly gifts, like lotions and potions and things like that. And she's just like, come get me with it. Yeah, just remember that I don't have this. Oh, I have something lovely. So my mom has started to describe for me smell sometimes. without me asking so she will go so. somewhere and we don't live in the same, she still lives in Idaho and I'm here in New Jersey. So when she visits her when I go back to Idaho to visit, sometimes she'll just randomly describe the way that a room smells for me and it's just lovely. So that's nice. Yeah, maybe people can do that for their partner who's new to Anosmia. Again, it kind of goes back to the need to be taken seriously or just to remember a lot of people, because one of the questions that I ask on the small podcast is what would you like people to know about what it's like living with Anosmia and a lot of people that I've spoken to in like over 90 episodes now will mention just like remember that I have this thing and don't ask me to smell this spaghetti, you know? Like so I think just if you're a friend or a family member that is something that has come out over time in the last three years or so is just like be aware of your person and the situations that they're struggling with and it can be really really meaningful if you remember that they don't or cannot smell. Okay, I have a few rapid fire questions. Are you ready? Sure. Okay, do you have a smell vision for the future? Smell vision. Yes, I would like smell to be as valued as vision and hearing in regards to like screening. So I think that when people take it as seriously and realize that it's really important for like mental health and safety, that's my vision for the future. That it's just automatically just as important as the other senses. Oh, actually we already covered the smell male question, which is how do I deal with a partner who is a Nazmi? Do you have any tips to share? Yeah, I'd say just tips in general is the I don't know sounds cheesy, but be your best your own best advocate in regards to like your treatment and reaching out to people on social media. I'll say it again, but like social media is fantastic. It can help you feel really connected. Just be aware that not all treatments online are the best treatment for yourself. Got it. Okay, and can you give us a shameless plug? Yeah, lots of shameless plugs. So I'm like in different areas of the smell world, but you can find the smell podcast on social media. So we have Instagram, Facebook, Twitter, and obviously just the smellpodcast.com. And then shameless plug for Stana, so the Smell and Taste Association of North America, please visit us. It's just the stana.org so you can learn more. And if you like to donate to Stana, that would be phenomenal as well. The money is that's raised is going towards these events that I was talking about earlier. So bringing in scientists, patients, people who can talk about the world of smell and taste and kind of building research and advocacy network for the United States and North America in general. Episode 93 will be coming out from you soon, right? Yep, episode 93 will be airing on 6th of July. So and that will be Charlie Atkins, a smell you never. So that's the episode that I mentioned earlier. So definitely come around and check that out. Sweet. Awesome. Thanks, Katie. You're welcome. Thanks for listening. Drop a question for our smell mail segment on Instagram at smell yeah podcast. Don't forget to subscribe. We're on Spotify, Apple Podcasts, Google Play, Stitcher and Podbean. Relevant links from the episode are available on our website smell yeah.net. Nothing but net. Smell you later.