Dysautonomia Explained: POTS, Diagnosis, & Treatment with Lauren Stiles
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Kara Wada, MD: Welcome back everyone and welcome to our new listeners. I am absolutely thrilled to introduce one of my favorite people on the planet. Lauren Stiles is the president of Dysautonomia International and she is a research assistant professor of neurology at Stony Brook University School of Medicine.
Lauren holds a bachelor's degree in earth and space science with a minor in marine science from the State University of New York at Stony Brook. Lauren has served in leadership positions on several government councils, non profit boards, and professional associations.
Lauren's Journey with Dysautonomia and POTS
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Kara Wada, MD: And she developed postural orthostatic tachycardia syndrome, also known as POTS, symptoms pretty much overnight at the age of 31. And after a relentless two year quest to find an underlying diagnosis for her symptoms, she was finally diagnosed with autonomic neuropathy caused by an autoimmune disease called Sjogren's.
Since co-founding Dysautonomia International in 2012, Lauren has been an outspoken advocate for individuals living with autonomic disorders. And in 2018, Lauren joined the faculty at Stony Brook University School of Medicine as a research assistant professor in neurology, where she focuses on autonomic disorder research.
She lives with her husband, her Jack Russell Terrier, and six amusing chickens on Long Island.
Thank you so much for making time to chat with me again, to come on the podcast.
I always learn so much when we connect and I feel like we're sisters. I hope you aren't, don't take that weird, but like with, uh, similar issues and similar, you know, like trying to change the world in our own ways.
Lauren Stiles, JD: I am a fan of yours as well, and I was so glad when we initially connected. I feel like there's so many professional women and people out there who are trying to do good work for these patient communities that are so underserved. And, you know, meeting another person who's trying to do that and also still managing their own health issues and being transparent about it, I think is so important.
I know that there are hundreds of thousands of other doctors out there who have serious chronic health issues, but the culture of medicine often tells them, "Don't talk about it." You know, "You're weak if you have a health issue. Don't tell your patients this." But I actually think it humanizes you.
It's real. It's the human condition, you know? So, I think, I just really appreciate that you are so transparent about what you're working on in your own health and trying to use what you know to help others.
Kara Wada, MD: Thank you. So, you know, for those that are listening, a fair number of folks that listen may experience dysautonomia, but I think, equal, maybe larger group doesn't know exactly what that means or what that encompasses.
Understanding Dysautonomia and its different forms
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Kara Wada, MD: So could you kind of explain for us, what is dysautonomia? And why is there an organization that you had that focuses on that?
Lauren Stiles, JD: Sure. So dysautonomia is not a specific diagnosis. It's an umbrella term that includes all of the different disorders that could happen to your autonomic nervous system. So if you remember back to like ninth grade biology, we have an autonomic nervous system and it has two main branches.
The parasympathetic branch, which is the 'rest and digest'. And the sympathetic branch, which is the 'fight or flight' kind of gets you pepped up to run away from a lion or fight it off, right? And, everybody has an autonomic nervous system and you never really have to think about it when it's doing its job properly. It does everything for you. It helps you with your digestion. When you eat a cheeseburger, you don't have to tell that cheeseburger to move through your GI tract and all the nutrients to get absorbed. It just kind of happens automatically and that's because your autonomic nervous system is helping move that food through your system. It's helping your kidneys filter out your blood and make urine. And it's helping your bladder work. It's helping your heart rate and very importantly, your heart rate and blood pressure are controlled by your autonomic nervous system, circulating blood throughout your body. And your sweating control is your autonomic nervous system, your pupils dilating and constricting in response to light.
So basically your autonomic nervous system controls all of your automatic bodily functions that you're usually take for granted when they're working properly. And so people who have, one, who have a form of dysautonomia can have a problem with one or more parts of their autonomic nervous system.
And most commonly when it isn't working right, it usually affects the whole system. There are rare cases where there's only a little subset of the autonomic nervous system not working right. But a lot of patients have a systemic autonomic nervous system problem. There's different criteria to diagnose the different types of dysautonomia.
Common dysautonomia types like neurocardiogenic syncope (vasovagal) and POTS
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Lauren Stiles, JD: And some of the most common types are neurocardiogenic syncope, which a lot of people know is vasovagal syncope. And someone might not even know the word syncope. They might have their doctor just told them you had a vasovagal reaction, right? Sort of a fainting spell triggered by extreme emotional stress or a blood draw or just being dehydrated on a sunny hot day at the beach, you know. So that's a really common form of dysautonomy that affects about 20% of the human population. But most people that get that diagnosis really only faint once or twice in their life and they're not like chronically ill with it. But there's another subset of patients that have that who are pretty much fainting two or three times a week, two or three times a day, and they're just really debilitated by it.
Another common type of dysautonomia is POTS, postural orthostatic tachycardia syndrome. That is the type that I have. And POTS, your blood pressure generally stays pretty close to normal when you stand up, but your heart rate just skyrockets and it can cause lots and lots of lightheadedness, brain fog, like cognitive impairment, where you feel like you're trying to say a word, it's on the tip of your tongue, but you can't get it out.
Or you're looking at a math problem and you have to read it like five times because your processing is just off. And this is in part because when people with POTS stand up, their autonomic nervous system isn't working right. And they're not getting enough blood flow to their brain. So that's a pretty challenging thing to live with. And it's very common. It's also, has a relationship with, you know, I know a lot of your listeners have different autoimmune problems and POTS has a close relationship with autoimmune disease. I always say if doctors would start seeing lots of POTS patients, they would learn very quickly about every obscure autoimmune disease under the sun, because in our patient community, I have learned about all these different autoimmune diseases that our patients present with. But, um, as you mentioned, you know, a lot of people have this stuff and they have something that, I sort of half jokingly say, smells autoimmune, but no one can put their finger on it. Probably because we haven't discovered the biomarkers yet that cause different immune system problems.
Limitations in diagnostic testing and the need for better biomarkers
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Kara Wada, MD: Yeah, I think that is one of the things that I spend a lot of time talking with patients about in the office, many of whom are on that diagnostic odyssey like you underwent, years ago where, you know, they're playing kind of this game of hot potato where they're being pushed from specialist to specialist office, trying to, you know, figure out what's going on, but no one is willing or able to take that holistic view or that airplane view of what's going on.
And then we have limitations in our diagnostics. So when you talk about the biomarkers, those are things we're looking for on those blood tests when we're doing like auto antibody tests or your blood count or your inflammation markers. And it's not uncommon for people to come in and have a really significant burden of symptoms and physical signs.
So symptoms are, you know, what you experience. Signs are, maybe the change in heart rate or blood pressure, you know, a little more quantitative type data. And yet the labs are normal and we, you know, I don't think, as doctors we do a great job of acknowledging or also sharing with people that there are blind spots in our testing modalities. And in particular, some of the things that I even learned at your conference, which I'm sure we'll talk about last summer, was there are some biomarkers out there that's not readily available for me to order yet in the office to say, "Oh yes, there is something concrete that we can hang our hat on," you know, that so often we really appreciate both as patients and as healthcare professionals, like to just have something like, "Yep, this is it."
The missing pieces of autonomic nervous system testing
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Lauren Stiles, JD: One thing that really frustrates me in this field is there are whole branches, there's whole anatomy of the autonomic nervous system that we actually have no way to test clinically or in research other than autopsy. So I'll give you an example. Right now, there are lots of people that get diagnosed with small fiber neuropathy, right?
And so your small fiber nerves are either sensory small fiber nerves that pick up pain, numbness, tingling sensations, itch, right? And then there are people with, if you're a sensory, small fiber nerves are damaged, it's very likely that your autonomic small fiber nerves are damaged too. And your autonomic small fiber nerves are found throughout your body.
And the only way we can really assess them is a little poke in your skin right now. That's the only way we do it clinically. And that test only looks at your sweat gland autonomic nerves, which are called sudomotor. S-U-D-O, is Latin for sweat. So, the sweat gland, small fiber nerves or autonomic nerves.
And so in about half of POTS patients, those nerves are damaged. And you can see that on different types of testing. But that's only one type of autonomic small fiber. There's actually vasomotor small fiber nerves that regulate your blood vessels. And for most people with autonomic dysfunction, your sweating is less.
Some people, the sweating is the main problem, but for most patients, really abnormal heart rate and blood pressure is a bigger problem. And we have no way of directly assessing those vasomotor nerves right now. When you get testing for small fiber neuropathy and it comes back normal, most neurologists will say you don't have small fiber neuropathy. But that's really not a fair statement because we actually haven't assessed all the different types of small fibers.
We don't have a clinical test for this at all. And there's maybe one or two labs in the whole world that do this as a research test, you know, so. So I get very frustrated when we tell patients something definitive when we're not acknowledging that the testing is not absolute, that the testing is actually missing quite a bit of stuff.
Another example would be the autonomic ganglia. So these are the sympathetic ganglia run like a chain of pearls down the side of your spine. I know, you know this,
Kara Wada, MD: No, listeners, it's great.
Lauren Stiles, JD: but along the spinal cord on both sides, there's like a chain of pearls that are your sympathetic autonomic ganglia. And, there is no imaging test to see if they are swollen and inflamed, if they're damaged, there's no neuro, like, for long, large fiber nerves, you can get an EMG or nerve conduction study where they kind of zap you and see how long it takes for that signal to transmit. We don't have a test like that for the autonomic ganglia.
There's no MRI or CAT scan or imaging test for it. So you could have a really damaged autonomic ganglia. And there's no way for a doctor to figure that out, you know, and so your testing might come back otherwise normal and they'll, "Oh, there's nothing wrong with you." But we actually have autopsy studies.
Thankfully, you know, POTS and neurocardiogenic syncope are not considered fatal diseases. But, you know, sometimes people have these conditions and they die from something else. And so, the handful of autopsies that have been done, we've actually found a problem with the ganglia, there was one POTS autopsy so far. It's not published yet. We were working on getting it published, where they found a problem with the autonomic ganglia in this patient and that's also been found in related conditions like chronic fatigue syndrome and in animal models of COVID. So like potentially, that that's happening in long COVID too.
And Sjogren's is well known to cause ganglia problems from autopsy research in the past. So I often think that a lot of these syndromic conditions that are not very well studied and not appreciated clinically by most doctors, that they have some neurological stuff going on in these patients that we just don't have tools for right now.
Kara Wada, MD: I think, one of the things that I've learned primarily through like the life coaching kind of training and kind of that concept is that like our brains don't like uncertainty. And, on the whole, doctors are people who want to fix things. They want to make people feel better. Like that's for most of us, like a big draw to the field.
And when you're stuck in this space with a patient that you don't fully understand or not even fully understand, you really don't understand what the heck's going on with their physiology or how to explain the symptoms they're experiencing. And then you don't have enough time to talk to that. You know, I can very easily see where that quickly can turn into a gaslighting situation.
The role of patient empowerment and holistic approaches to managing dysautonomia
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Lauren Stiles, JD: Yeah. One of the things I loved when I connected with you is that while we're waiting for the research to figure out these conditions and we're waiting for more answers on the biology of these complex chronic illnesses that often overlap, there's no need to just sit around and wait and hope, you know? I think there are things you can do for your immune health. And you have really emphasize that, that like, you know, there are lots of things you can do yourself that don't even require medication to try to reduce your inflammation and sort of strengthen your immune system.
And so, I wish that we could get other doctors to talk to patients about that.
Kara Wada, MD: Oh yeah. I mean, I think all of that really came to that turning point of my own diagnosis and really looking at what at the time, so I was diagnosed with the Sjogren's in 2019. In hindsight, like I had symptoms that either were prodrome and or who knows clinically, you know, if what my labs would have been back to college.
But seeing, you know, there was this big gap in treatment availability, targeted treatment and not just wanting to sit and just like let things happen. Like I'm a doer. Like, I always want to, you know, I have to be doing something. I'm learning that I am worthy of rest and rest is important, but I do like to be doing something or having some forward progress.
And so that really spurred my personal action. And then, okay, how can I help others navigate 'cause there's so much out there in the wellness sphere. Like what, you know, how do we distinguish between levels of evidence and make things practical, too. Like when you don't have lot of extra spoons, you know, or, you know, the time, the energy or money, like there are always going to be limitations. So,
Lauren Stiles, JD: I found that, and I think I see this in other chronic illness patients too. In the beginning, a lot of us think, Oh, the framework you have for medicine, if you've always been healthy is, Oh, I get sick. I go to the doctor, they figure it out, they give me a pill and I get better. And that's how it's supposed to work.
But that's not usually how it works for people with complex chronic illness, right? And even if you're lucky and you find the best doctor for your condition, they probably have a pretty limited arsenal of what they're going to talk to you about and tell you about. But then over time, like you try all that and it helps to some degree, but it isn't the magic bullet you were hoping for, right? And I see a lot of these patients becoming a little bit more intellectually curious and investigational on themselves. Like, well, let me try this and let me try that. And it's exhausting because you have to read up on it and find a way to buy it. And how do I get access to this, you know? But then at the same time, like there are risks, like there are definitely lots of people out there pushing stuff that is not really safe or that it's just false hope, you know, that is, it's benign, but they're charging $99.95 to buy it and it's not going to do anything. So like getting patients, you know, what are the holistic at home natural things you can do in addition to what your doctor's talking to you about, you know? And I just have a real frustration, like why I have Sjogren's, just like you, right? And I saw some of the best Sjogren's experts on the planet. And not one of them said to me, you know, you should probably try Omega 3s, right? It's very anti inflammatory. It's evidence based. There is real research showing that this is helpful. No one ever said that. It's such a simple thing. It's fish oil, you know?
Kara Wada, MD: just need to find a brand that doesn't give you sushi burps.
Lauren Stiles, JD: Yeah, I actually have a seafood, like a crustacean allergy and most omega 3 comes from like, you know, I have a bunch of seafood allergies, but anyways, I found one that's algae based that's kind of, it's like a vegan omega 3.
I don't know if it works as well, but, you know, just frustrating to me, like why did no doctor suggest this really simple thing that is a, just part of a healthy diet too, not even supplements, just, you know, making sure you eat an anti inflammatory diet. No doctor ever said, "Try eating in proteins and lots of veggies."
And that's something I wish more clinicians would take the time for. It's not a billable, right? You don't get to put an ICD code in that says I gave the patient dietary advice, right? So a lot of doctors don't, I mean, I know you talk to your patients about this kind of stuff, but I don't see enough focus on that kind of not woo, kind of, you know, not real holistic definitely evidence based stuff is there and it should meet the standard of, you know, the big shot experts who are getting paid a lot of money to tell us that we have a disease or not, you know? So anyways, I'm just venting my frustration.
I want patients to get, you know, the confidence to say, "Okay, I've read enough journal articles. I think this is safe enough to try and let me try it for three months." And you know, if you don't feel anything, then stop spending money on it at some point.
Kara Wada, MD: That's what this podcast grew out of, was essentially, one to, you know, a little bit of sharing my story frustrations with navigating, but also it was an outlet for me to share some of the knowledge and the awesome people I've connected with on this journey with my patients to say, hey, you know, we only have 30 minutes in the office for a follow up visit, which is more than most, to be quite honest.
But I have this YouTube or this podcast episode that you can go watch where I talk with one of my colleagues who is an expert in anti-inflammatory nutrition and will help you kind of get started on that and share more information than I ever could just in that office visit when we also needed to make sure we checked how your nose looked and how your lungs sounded and get your meds refilled and
Lauren Stiles, JD: I think for patients, it's so, for me anyways, realizing that no one is going to save me. Even if I have a great doctor that really cares about me, is compassionate, is smart, understands dysautonomia and sjogren's. I have that. I am very lucky that I have one of the world's top experts in dysautonomia and sjogren's as my doctor.
But even with all the tools in his toolbook and his compassion, that wasn't enough, right? I needed to take charge of my health. And it's so intimidating. It's like, Oh God, I'm bedridden. How am I dealing with this? You know? And that realization that your health is really in your hands is terrifying, but also once you embrace it, really empowering. But it's a hard place to get emotionally because it's kind of terrifying admitting to yourself that the best drugs and the best doctors still don't guarantee you're going to get better, right? So that's, for me, really hard.
And I had the, I guess, privilege of, you know, being able to see an expert and being able to access immunotherapies that a lot of patients don't get. But even with all of that, there was 90% of the feeling better came from stuff I had to do. And that's, it's hard work. It's like a full time job, right?
Kara Wada, MD: It is. Yeah.
Dysautonomia International's mission and initiatives: education, research, and advocacy
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Kara Wada, MD: I think that's a good segue in thinking about, you know, your work of empowering patients through Dysautonomia International, you know, really doing so much work advocating for our patients in all the ways. Maybe you can talk a little bit more about kind of how that shows up and the initiatives you guys are undertaking.
Lauren Stiles, JD: Yeah. I think, first and foremost is making sure that patients and for the pediatric patients, also the parents, you know, have access to the most up to date and accurate scientific information on their disease and not dumbing it down. You know, there's a tendency for researchers, you know, or pharma companies or government, when they're talking to patients to just water it down to like something benign and not be serious about it.
And instead of dumbing stuff down, what we have tried to do is sort of level up, you know, like teach the patients the lingo, teach them the diagnostic criteria and why they are what they are and what is the most effective testing and really give them the knowledge that we wish all their doctors had.
Because, you know, if you have a common, well researched, well understood disease, a broken arm, let's say, you don't have to be an expert in that because you can go to any emergency room in the country and they know how to fix it, right? But when you have a form of dysautonomia or an autoimmune disease like Sjogren's, you have to become your own expert to maximize, giving you your best chance of having a good outcome or a better outcome than if you didn't become your own expert. So, the number one thing we do is try to give people the current accurate information. Also funding the research. Like there's all these scientific questions about POTS and other forms of dysautonomia that remain unanswered that hinder our patient care. Like we can't get access to this drug because we don't actually know if it works. And we don't know if it works because no one's ever found the biomarker that could be treatable by that drug, right? So we're funding mechanistic studies that help us understand what causes dysautonomia and trying to get to the sort of root of it as much as possible, which is different for different people.
And then, you know, while that work is going on, also funding clinical trials at the same time to try to find more effective treatments. Because even if you don't fully understand a disease, the people living with it right now need better treatment options. So we're kind of going on that dual track of trying to find the underlying cause, also trying to find more effective treatments, you know, while we are living right now. If you wait until you have the perfect biological understanding of the disease, that's going to be 10, 20 years and people living with it right now can't wait. So we're doing both. And, um, the reality is even diseases that have a lot of FDA approved treatment options, we don't fully understand what causes it, right?
So we don't think we should have to wait longer to have more, you know, patients deserve more effective treatments right now. So we're pushing ahead on that. We're also pushing ahead on a lot of clinician education and outreach, because I always say, even if we had a cure for every type of dysautonomia tomorrow, most people wouldn't access it because they're not getting diagnosed.
They're getting gaslit or once they are diagnosed, it takes three years to see a specialist or they just can't depending on where they live geographically. There's no one in 500 miles that has any expertise. So we need to train the doctors to understand how to diagnose and treat these conditions so that when we do have more effective therapies, that they can be implemented quickly in the community. And then probably the, I wouldn't say the last part of it, but advocacy at the federal level. So we are an international organization, but we have focused our political advocacy at the US Congress because they fund more medical research than any other institution in the world. So if you're gonna try to get the most bang for your buck, you advocate for Congress to do more for your disease.
And so we have right now, actually, I can share the link if your listeners are interested. We have a tool that lets you email your House and Senate members in like two clicks. It takes like 10 seconds. And we're asking them to fund dysautonomia clinician education funding to go to the center for disease control to really start at the federal level, having an educate, you know, we're doing all the education we can as a nonprofit, but that's not the same as what the federal government could do if they put their mind to it.
So advocating for that. And then we've also advocated for increased dysautonomia research funding and better coordinating research at the National Institutes of Health so that all these overlapping conditions, which I'm sure you've heard of the term, sort of a newer lingo, infection-associated chronic conditions.
And that's things like long COVID, ‎ME/CFS, post viral dysautonomias and POTS. A lot of these patients end up diagnosed with Mast Cell Activation Syndrome and Ehlers-Danlos Syndrome. A lot of them are getting diagnosed with autoimmune diseases. These things kind of all have like an overlapping Venn Diagram and they're all neglected in an academic medicine and they're neglected by pharma and they're generally neglected by the government. Long COVID being the exception, long COVID has gotten like 2 billion in funding to date, but that funding wasn't spent very effectively by the government because they didn't include people who had experience working with those kinds of patients. Unfortunately, I mean, I'm a little bit ranty right now, but the government, you know, I think they viewed long COVID as this totally entirely new thing. And they had all these new people coming into the discussion and really just ignoring the fact that the vast majority of what we're calling long COVID is actually an infection triggered dysautonomia slash ME/CFS, right?
Now that's not saying that's the only thing long COVID is, but that's the big bulk of it. And it's building upon that existing research infrastructure, they just sort of started, you know, reinvented the wheel and, have done a lot of testing that we could have told them in advance was going to be normal because they, you know, they didn't have the expertise in the post viral syndromes that is already out there. You know, there are people who have that expertise. So anyways, yeah, we do a lot of federal advocacy to try to meet the needs of these patient communities.
The challenges faced by researchers and clinicians in studying and treating dysautonomia
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Kara Wada, MD: I'm thinking through some of the conversations I'm in, in the process of starting and having in my own clinical environment, you know, over the last few months, beginning of this year, kind of made this decision that I really wanted to focus my clinical time on kind of two main efforts, one being mast cell, understanding that better, becoming more of an expert specifically in that area because there is such a need.
And also kind of my work with more innovations in immunotherapy, knowing and thinking that there may be some overlap in that. But what I, you know, what I'm realizing in doing this is I am needing the support of others that are also interested, needing that extra time with patients, needing to build my own continuing education, you know, in areas that I haven't studied in a long time, you know. That was part of me being able to go to the Dysautonomia International Conference last summer, which I really, you think of these like little points in time that are like really move the dial forward huge.
Such a powerful event that you put on. And just it is slow going and it is interesting trying to navigate all that. I will just say in a large academic center as still someone who is still for a tiny bit longer junior faculty, a little bit longer, I can consider myself still that. I think, you know, just keep on taking that next best step forward, I guess.
Lauren Stiles, JD: I think it's even hard for senior faculty, very distinguished gray haired professors have a hard time studying these diseases. And so we, I spent a lot of time trying to figure out what are the barriers because I want to go through those barriers with a bulldozer, right? Like what are the barriers? And I, I see some of the barriers are lack of research funding.
So we're trying to raise as much as we can to fund research. And we don't just fund research on POTS. I think some people think that because our POTS funding has gotten a lot of social media conversation going, but we do fund research on all autonomic disorders as well as, we have a POTS research fund, a dysautonomia research fund that's for all the other autonomic disorders, and a long COVID research fund that focuses on the role of dysautonomia in long COVID.
And so trying to raise it what we can privately, but definitely recognizing that government and industry and pharma needs to step up. And, then there's, I think there's pressure from academic departments, like from department chairs saying, I know some very well known Dysautonomy experts whose department chair says, " Why don't you just do multiple sclerosis? There's so much more money in that." Right? And they're not lying, right? There is more money if you are an MS expert, you have better billables as a doctor, because there's more treatment options. You have more research funding opportunities because there's literally $150,000,000 a year from the NIH for MS, which impacts about a million Americans and about $2,000,000 a year for POTS, which we estimate impacts like 3 to 6 million Americans.
If you were a researcher, why would you pick POTS as a field? There's no money in it, you know? Um, so that funding thing impacts what your supervisors say to you, right? Like, don't go into this field. There's no money.
Kara Wada, MD: And I will say on the micro level of just, you know, being a clinician that's not particularly extra like I do a little bit of research, but no big projects to this point. Reaching out to colleagues in other areas to say, hey, is there anyone in your area that has interest in helping me with patients who have hypermobility, who have POTS, and getting the pushback of like, no, because quote unquote, they're hard to take care of.
But what I really think they're saying is I don't have the time. I don't have the tools in my toolbox to feel like I'm doing good, right? And so that's my current rant and frustration. If we're going to have a little and say, if you can help me with that, please, 'cause I need someone who is a cardio or a neuro expert, you know, or a physical medicine to help me.
Changing Minds and Confronting Medical Gaslighting
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Lauren Stiles, JD: I have a story for you on that exact issue. So we were doing an exhibit booth at an American college of cardiology conference in New York city. And we had our Dysautonomia International like display behind us. And it's a photo, it's an image of a high school aged girl that says she has, you know, she looks fine, but if she has a form of dysautonomia, she might be experiencing that has like a list of symptoms.
It's this giant like billboard thing behind us. And this doctor cardiologist walks past our booth and literally shouts at us, I hate POTS patients. It was just like the most random thing. Like, could you imagine a doctor saying, I hate down syndrome patients or I hate breast cancer patients. Like what? Who says that? He felt so entitled that he could say this.
So instead of being raging mad and yelling back at him, some four letter words, I actually just let him walk by and then I went up to him. He sat down in the cafeteria, not too far from where we were. So I went up to him and I said, "I want to ask you a question. Why do you hate POTS patients? What is it about POTS? Why do you hate them? Why did you feel the need to shout that at my exhibit booth?" And he said, "Because no matter what I do, I can't get them better." So I said, "Well, why would you hate them for that? Maybe you should recognize that you don't have the right tools in your toolbox?" Because there are other people who know how to get them better to some degree. Right? And so he kind of looked at me and was like a little grumbly and then eventually came around. We had a good conversation and I left him with a journal issue, a special issue on POTS. We wrote in autonomic neuroscience, myself and Satish Raj were the guest editors. And it's like 19 journal articles of everything we know about POTS as of 2018.
And I gave this to this doctor and he was like perusing it. And he came back to me the next day at the conference. And he literally was like, "I had no idea." Like he didn't, he didn't know anything about POTS. He didn't know that there was small fiber neuropathy. He didn't know that there were different treatment options that he wasn't aware of, you know. And so it was to me, like that is, I try to remind myself of that. When you hear doctors like really being awful to these patients, yes, it's infuriating and you want to rage back at them, but really that's not going to change the situation for the next patient. So what we have to do is confront them and say, look, you just need to learn about this. And training people early before they get that kind of jaded point of view, training them young to recognize that this is real and that there are treatments and that there is known biology behind it. It's not just anxious, young women, you know? It's a change in mindset. I think it's really hard for patients to not to let go of that anger because it is deserved, right?
There are a lot of people who are treated really poorly. Including me, just like every other dysautonomia patient has have been, we could probably have like a gaslighting contest to see who's had the most defensive things sent to them, but you know, rather than wasting your limited energy on just being angry, putting it into the harder path of changing minds, you know? It's very easy to be angry. It's much harder to have a real conversation and try to move someone's thinking forward.
Kara Wada, MD: And I think, as I think through the lens of medical education, it's going to take some time too because the unfortunate reality is that you pick up those messages from your teachers and if you have someone who is jaded, who is your attending, your mentor, those preconceived notions get passed on. And that's part of some of the toxicity that just exists within medical training that I think slowly the dial is turning, but it's still an issue.
Lauren Stiles, JD: We're trying to turn it as fast as possible and getting into as many medical centers as possible, empowering the doctors like yourself who are understanding of this, who are trying to help, who aren't being dismissive. And for those who still are being dismissive, just not giving them a platform, you know, like they're going to do their thing, you can't control them. But, um, they're not getting invited to lecture at our conference. And we're not, we're not going to, you know, send a recruiter to them to interview them on pods or something like that. I do see it, a tide changing. I can tell you, I started giving lectures at the Stony Brook Medical School, which is here on Long Island in New York, in 2018.
And the first lecture I gave on POTS there, it was a grand rounds. And I had several people in my department say, "I can't believe I never learned about this in medical school. Like this is shocking." I had a very senior academic neurologist say, "40 years in academic neurology, I've never heard of this. And now, I have nine medical students in the incoming medical school class who are like begging to do POTS research with me. And they're learning about it every, um, I think in their second year curriculum, they get some content on it. And I am giving an annual lecture now to medical school and the dental school.
And, um, funny enough, you know, autonomic dysfunction causes dental problems because you can have dry mouth, especially in the Sjogren's patients. So just that, that one medical school, I see a real shift. And I know that that's happening at other medical schools around the world, maybe because some faculty member got POTS or their kid did, or a doctor or a nurse on the front lines got long COVID, right? And there's like this awakening. It's very slow. It's never gonna be fast enough for the patients who are desperately waiting for help right now, . But I do see a change, a real change because in the, say the old days, in the beginning when I was first diagnosed in like 2010, if I went to the emergency room for something and said I had POTS, they would have no idea what it was. And now if you go to the ER, they at least usually have heard of it. They might not be like super experts in it, but they're not going to be like, "What's that?" You know? So that's a change. And that is in large part due to advocacy by hundreds of thousands of patients and family members and doctors like you who are sort of allies for this patient community. So thank you.
How to Get Involved and Support Dysautonomia International
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Kara Wada, MD: How can listeners get involved? How can they support your work? Where can they learn? I know you have a treasure trove of educational resources, you know, that you've amassed over the years. Where can we connect? And a reminder for those that are listening, you can click on the show notes and find them after you get to wherever you're driving to, what have you, we'll have it all there for you too.
Lauren Stiles, JD: Yeah. I'll share some links. We have support groups in all 50 US states and 60 other countries. We also have community based groups for male patients, because they're pretty uncommon in the dysautonomy world. For black patients. We have a Spanish language group. We have an LGBT group. We have a military families group.
So we're really trying to give people places where they can connect and learn from each other. Um, and that's a really helpful thing.
So yeah, there's lots of ways to get involved. We have, um, I think I mentioned before we have an advocacy thing going on right now where we're asking people to contact Congress and, uh, demand dysautonomia training, clinician education funding. So I'll share that link with you too.
Kara Wada, MD: Awesome. Yeah. And those automatic letter generators are genuinely helpful. Like that's why you're using it, but it's super easy for the user. And really does make its way to your Congress person. I know that's one of the ways we've moved the dial kind of with safer beauty kind of stuff with beauty counter. That's been one of their main ways of advocacy too, and it is so simple. So I'm going to have to do that after we wrap up. Good reminder. Yeah.
Lauren Stiles, JD: The congressional offices do track it. They, they, you know, do know, Oh, wow. We got contacted by 800 residents in our district about this particular disease. And so they remember that not only for the legislation we're pushing them on right now, but then next time we ask for something for dysautonomia patients, they'll be like, Oh yeah, we got a lot of emails from those people last year. So keeping the pressure on, you know, and helping with that. So thank you so much for highlighting the work that Dysautonomia International is trying to do. And for what you do, I learn a lot by, um, chatting with you and listening to your videos too.
Kara Wada, MD: Mutual fan club society. Um, thanks so much, Lauren. I hope you have a better than expected rest of your week and I hope we get to chat again soon.
Lauren Stiles, JD: Yes. Okay. Bye.
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