Episode Transcript
[00:00:00]
Jill Brook: Hello, fellow POTS patients and magnificent people who care about POTS patients. I'm Jill Brook, your hyperadrenergic host, and today we have an interview with an amazing woman, Christie Cox, who has done so many incredible things. First of all, she wrote the best selling book, Holding It All Together When You're Hypermobile.
Second, she is the person behind the monthly newsletter at Edsshare. com and the living library at eds411, and she'll talk all about that. And more recently in the POTS world, she has written an incredible article about how to tell the difference between anxiety and POTS, and what happens when your POTS gets mistaken for anxiety.
And unfortunately, this is something that Christie knows about firsthand. So, I'm so excited to have you here today, Christie. Thank you for being on our podcast.
Christie Cox: Yeah, thank you, Jill. I'm so [00:01:00] appreciative for the opportunity to be able to talk with you and your listeners. And, you know, I'm so grateful for what all you do for the community, both in your site, in your nonprofit, and the resources that you, you know, are kind of like me, a fellow patient who's trying to pay it forward so people down the road can have an easier time with these challenging diagnostics.
Jill Brook: Yeah, so I guess we know you've written a book, created a monthly newsletter, created a living library, writing incredible articles, but like, what should people know about you as sort of like some baseline information just about Christie.
Christie Cox: So I have a career history in, you know, like communications. And so when my life got disrupted by all of this you know, it sort of hit me first time postpartum when I was, you know, in my early thirties. And, you know, we thought we had it managed. And then like another freight train sort of hit me when I got into a car accident [00:02:00] that brought to light that I had cervical instability.
And so that led to oh, okay, well, you, you definitively have hypermobile EDS and that led me to, okay, you know, eventually I got to POTS and then eventually I got to cranial cervical instability and I've had two fusions to fuse that, so, you know, it's, it's like I've run the gamut of, of some of the things that can happen to people with EDS.
So I try to take that history of what I used to be able to do for work, because I can't work anymore and put it into something that is like a passionate hobby to try to help other people going through this. And that's where the book was born. And I thought that was going to be the end, but I just keep going and keep going.
You know, maybe, maybe it's that I like to feel productive. And you know, chronic illness doesn't really give you a whole lot of sense of value. So this is how I create it for [00:03:00] myself.
Jill Brook: Oh, that's beautiful. Well, you certainly are a great role model for holding it all together when you have all this. So I guess, what if we start by talking about the POTS stuff and then we'll get into your book and your newsletter and library because our audience is POTS focused and you recently wrote an article about how POTS looks a lot like anxiety to somebody who maybe is not an expert.
Can you talk about that article? And at some point I want to get into why you know so much about this, which unfortunately I think you learned the hard way.
Christie Cox: Yeah, yeah. This is really one topic I've never talked about, like, publicly. I don't even know that I've had conversations with my loved ones about it. It was just sort of like reflecting back, going, Oh, wow, this is what happened, and this is not right, and I need to use the platform to try to share with other people.
So, you know, I was thinking [00:04:00] about this, this misdiagnosis maze of, you know, anxiety versus dysautonomia or POTS. And just for simplicity, I'll say POTS, and sort of referring to all of that. You know, trying to figure out, is this panic or is this POTS is really hard. It's hard to know yourself, it's hard for doctors to know, and it's certainly hard to know what to do about it.
So, you know, a lot of us are misdiagnosed with a lot of different things, but you know, this falls into that, you know, being dismissed, gaslit, and, and, Oh, you know, your symptoms are psychosomatic here. Let me give you a pill. And that's really a harmful way to handle a lot of the things that, that this population is going through.
And I went through this personally where you know, I had tremors and, you know, bad anxiety, heart palpitations, you know, I'm [00:05:00] fainting, all the syncope, you know, traditional POTS things, and people started to think I had Parkinson's. You know, so I was going through that kind of gamut of tests, but the psychiatrist thought, you just have, you know, like generalized anxiety disorder, and let's put you on some anxiety meds.
And when you don't know, you don't know that they're putting you, you know, I got put on you know, benzodiazepine. But when they put you on that, I mean, it certainly can calm you down. But when you have POTS, it's not treating the issue of what your symptoms' source are coming from. And so, I feel like telling this story, for me, is sort of like coming out as, you know, a former zombie.
Because I ended up on if you're familiar with, with you know, some of these medications, the typical starting dose is about 0. 25 mg. And that, that, you know, like can [00:06:00] titrate up to like 0. 5. But, you know, typically it's in those low levels. I ended up on 4 mg ER every day. And that was because they were like, we can't calm this down.
Let's give her some more. Let's give her
some more. Why isn't this working? What's happening? And I was a literal non thinking, zombified person who I actually have a lot of lack of memory from, from those years of being in that situation. And it wasn't until I found a really competent, knowledgeable, like neuropsychiatrist that could help me understand the variables or what was going on after I got diagnosed with POTS that was able to go, this is not what you should be on.
You know, this is more like a cardiac problem and we need to titrate you down. And that was a horrible process because no one tells you that benzodiazepines are [00:07:00] addictive. And so, you're going through I had like a year long withdrawal period that was horrible. And I wouldn't wish that to happen to anybody, particularly when it's not necessary.
Jill Brook: A moment ago you had mentioned for those who are familiar with the anxiety medications or benzodiazepines, but for those of us who are not what else should we know about those? So, like, they're addictive? Were you warned that they would be addictive? What else, what else should people know?
Christie Cox: You know, I'm not sure whether it's appropriate for me to name the brand that I was on. I mean, they are addictive, and I was not warned. And I may be simplifying this, but I feel like today, like almost everybody is carrying around some Xanax, you know, it's like, Oh, you're stressed today, pop a Xanax, you know, it's become so like culturally normal and acceptable.
And I would venture to bet that a lot of people don't recognize how [00:08:00] physically addictive that they can be, you know, in the same vein that like opioids are, you know, and, and I think it's an awareness situation and you know, our, our medical system is so easy to just go, Oh, let's put a band aid on the symptom and patch it with a pill.
Jill Brook: You know, what's amazing to me is that, for example, in our space, a lot of patients are taking low dose naltrexone, which is an off label drug. And a lot of the physicians I know that use it, they make patients sign something that says, I'm aware that this is not a POTS drug, I'm aware that this is off label, blah, blah, blah.
And that's for something that is a, like, 2 percent dose of something that sounds super benign to begin with, and yet somehow it seems like benzodiazepines get a pass and they hand them out and they don't give you the warnings that it can be addictive. And I don't know if you've heard any stories like this, but I [00:09:00] have heard stories of people who feel like they got their dysautonomia in the first place from the experience of coming off certain types of drugs maybe too quickly or maybe in a bad way.
And it's not, it's not just
that you had a rough year, you know, there can be lasting effects from that, right?
Christie Cox: Yeah, yeah, that's tragic. I'm, you know, I haven't heard a lot about that, but you're much more knowledgeable in the Dysautonomia world. You know, studies are saying that, you know, we're starting to realize that, that these conditions of, you know, EDS and POTS and Mast Cell, you know, coexist, you know, that they're often found together.
And you know, there's studies that say 63 percent of people with, with hypermobility meet the criterion for anxiety. And my question to that is, well, duh, how can you not have anxiety [00:10:00] when you have a dysregulated autonomic nervous system? You know, I mean, if you have instability in your joints, you know, I know particularly with me, it was right here at the base of my skull.
And so that causes neurological problems, which you know, it's going to send your body into fight and flight of like, Hey, we got problems. You need to do something. I think I'll pass out. You know, and so it's, it's like, well, you know, how do we do this? And then, you know, our population of people deals with a lot of chronic pain, you know, chronic pain impacts you way more than physically.
I mean, it's a mental barrier. So this connection of, you know, what I'll call like mental health issues tied to these conditions is kind of like, no, duh.
Jill Brook: Well, and also in POTS, we know that the brain tends not to be getting enough circulation. And so that increases the fight or flight. And so, of course, anxiety is a part of that. And I just want to be clear that I think we're not saying that there aren't people who would [00:11:00] benefit from benzodiazepines as
part of their treatment. It's just that when you're mistaking POTS for anxiety and throwing more and more higher doses, like in your case, instead of addressing the underlying problem. Wow.
I mean, I'm so happy that you wrote an article to help people figure out when that might be happening, what you can do to prevent it.
Christie Cox: Yeah, so think about, you know, why it's just misdiagnosed is, you know, POTS is frequently, you know, put in the same bucket with the symptoms because you have heart palpitations or heart rate, you know, you have dizziness you have, you know, you know, these other things, like, I don't know about everybody, but, you know, sometimes you can, you can have the shakes or tremors and a lot of these issues and brain fog that, you know, you can't think clearly and your memory's going and so a lot of that really mimics, it, it, it mimics anxiety disorders and when you recognize that POTS is, you know, not [00:12:00] caused by anxiety, but patients that get diagnosed with anxiety, then they have significant delays in diagnosis and treatment for the right thing.
You know, and so I think about if I'm sitting around a circle with several of my friends and I, and I ask them, you know, like, okay, let's be open. How many of you have some Xanax in your purse? You know, I would venture to bet that most of them do because it's very common. And then if I asked, you know, my particular group of friends is going to be a lot of people with these conditions because we all, you know, gather together, how many of them got misdiagnosed the first time before they figured out it was POTS?
And I'm afraid it's higher than we want to recognize, you know. So I guess I decided to sort of come out and in my patient advocacy and talk about this and raise awareness, not only for patients, but for providers, you know, to be able to say, you know, you know, this, this diagnosis is really [00:13:00] complicated and there's a lot of overlap, but there are, you know, diagnostic tests.
For example, you know, as your population knows, you know, there's the tilt table test and some things that can help you differentiate these symptoms that, that can isolate, okay, this is dysautonomia, or, you know, this is you know, anxiety, which I would imagine you're going to have, but you don't get treated for a diagnosis of anxiety.
You can get treated as that's a symptom of what's happening with you, but it's not like a root cause. And they just throw medication at it. Because that leads to inappropriate treatment and prolonged suffering. And, you know, in my case, it really impacted the quality of my life. You know, I mean, that doesn't even add to the complications of, you know, particularly women are told that these things are all in their head, and they're, you know, dismissed.
And then you don't feel [00:14:00] like you have the strength, or the energy, or the, you know, willpower to kind of fight for yourself, to say, hang on a minute. This is not just anxiety. There's something else going on here. Can we please keep looking?
Jill Brook: And can I ask a question? Like one thing that comes to mind for me is that when you try a new medication, that's a pretty slow process, right? So like you try the lowest dose and maybe, you know, I don't know how long your doctor wants you to try that before you come back and you say this isn't working.
So they try a higher dose and then you spend, you know, six weeks, eight weeks, who knows how long trying that. Like how how much time of yours was wasted on this misdiagnosis going down this path?
Christie Cox: Years, many years. You know, I ended up, as I mentioned, you know, I got in the car [00:15:00] accident that led me to a physical therapist who, you know, I thought I had whiplash. So, you know, they're, they're handling my head and my neck as I lay on the table to try to evaluate. And, you know, they immediately said, you need to go to the emergency room.
And, you know, I'm thinking, why? What's wrong? You know, long story short, you know, you go to the emergency room and they run x rays and they sent me home saying, oh, just go home and have a glass of wine and get over it. You, you just are suffering from, you know, muscle pain. Well, it ended up that, you know, I had cranial cervical instability and my, you know, pumpkin sized head was falling off my spine and sliding back more than the, you know, the five millimeters that it's supposed to.
So obviously, there's neurological problems and my body was in, okay, we're in high stress. I'm gonna send you every signal I know how to send you, you know, make you pass out, make you vomit, make you nauseous, you know, like walk into walls, you know, you're gonna lose your ability to speak.
Jill Brook: [00:16:00] Wow.
Christie Cox: Being able to get to the right POTS diagnosis, which thankfully I did when I got, you know, I got diagnosed with Hypermobile EDS and that geneticist said, I think you also have Dysautonomia.
You need to go see, you know, this expert cardiologist. And they do those tests that you know, we're all familiar with. And you know, sure enough, I have the hyper, I can't ever say it, hyperadrenergic POTS, which is, you know, your autonomic system is on total overdrive all the time. And so, my doctor, my cardiologist and I worked up a plan to be able to find a way to calm my autonomic nervous system.
You know, and that of course meant there were some medications. I mean, you know, whether it was beta blockers or, you know, other things. And there's so many that, you know, different recipes of what works for POTS patients, but a lot of it is was [00:17:00] me and lifestyle daily habits of learning how to calm. And it started with using like the calm app and meditating, which I didn't even know how to do.
You know, six, seven, eight times a day for like a year to try to get my heart rate that was in the one fifties laying down at rest.
Jill Brook: Wow.
Christie Cox: And now it's in the, the 50s and 60s when I'm walking around. I mean, so it's really retraining all that overactive stuff through biofeedback and, you know, literally everything I could do to just change my environment and my internal talking, you know, brain to my body and everything else to go, hey guys, we got to calm down because the cardiologist told me you're not going to make it to your next birthday when I was 48.
So I was highly motivated.
Jill Brook: Wow. Is there anything else in this [00:18:00] article that you want to highlight? And we'll link to it in the show notes, but maybe you can mention where people can find it.
Christie Cox: Yeah, so, we'll link to it in the show notes, but it's part of some content that I helped create for an EDS nonprofit called Chronic Pain Partners, and so it's on their website. But what I really want to share with, with your audience is some tips to know the difference between anxiety and, and POTS.
So, we all know postural changes, are a big thing that impacts people with dysautonomia, and you know, it's the symptom that flares up when you change positions like standing up. Well, that's not a symptom that happens with anxiety. The second one is, you know, when you're using your heart rate monitor, it can be an invaluable tool to be able not only to track your heart rate, from lying down to standing up.
And as you know, [00:19:00] if it goes up by more than 30 beats per minute in those, you know, first few minutes after standing, that's indicative of POTS. And I think people can do this sort of at home, you know, tilt table test without having to go through that torture.
Jill Brook: Yeah, yeah, poor man's test or a
NASA Lean test.
Christie Cox: And so, you know, that's another sign.
That's not anxiety. And, you know, anxiety can kind of come and go inconsistently, and it can have triggers that are often like a stressor or an emotional situation. And POTS symptoms are much more consistent. They're, they're tied to that physical location of exertion much less than emotional stress.
I mean, they can all go together, but you, you understand what I'm saying.
Jill Brook: Yeah. And I have to laugh because I'm remembering a patient who once told me a story that she figured out the difference between POTS symptoms and anxiety symptoms because what she would do would be to eat her favorite carby [00:20:00] snack and when it would calm her down, she knew it was anxiety she was feeling, and when it would make it worse, she knew it was POTS she was feeling.
Because eating carbs can make POTS worse.
But it makes anxiety for some people, at least her, better.
Christie Cox: That's interesting, you know, because I've always been hypoglycemic and so, you know, I monitor my carbs and you're right that I hadn't thought about that. That's a pretty interesting way to do your at home test.
Jill Brook: Not official, but it worked for
her.
Christie Cox: Right. I mean, you know, like figuring out the blood pooling, you know, anxiety doesn't cause that.
Your ankles don't swell and turn purple. But you know, it's also, there's obviously, you know, medical tests and EKGs and all these things that are not part of a standard psychological evaluation that, you know, maybe you should see a cardiologist who understands this and you know a psychologist or [00:21:00] psychiatrist who understands the sort of mental part of this to try to discern these symptoms, you know, to have a compare and contrast of, okay, it's more like this, and, and that might be a way to kind of combat, you know, this misdiagnosis that might help both patients and health care providers.
You know, they're all there to help people. They don't want to misdiagnose. They're just doing the best they can with this volumes of data they carry around in their brain about how to cross reference what causes this. I mean, it's a job that I could not do. I mean, you know, thank goodness for medical professionals.
But it can go the wrong way for some patients and unfortunately for patients like me, you know, you, you get caught up in benzodiazapines which are, you know, sedation and fatigue and blood pressure and heart, you know, all these sort of inappropriate adverse reactions. [00:22:00] So what I would say is anybody who feels like their symptoms are like maybe wrongly attributed to anxiety, you know, trust your instincts, and if what you're experiencing doesn't really align with, you know, what you're reading about the symptoms of anxiety, maybe go Google the symptoms of POTS, and see if some of that lines up better, and have those conversations with your care providers.
And yes, I understand that, you know, maybe if you go to your GP, they might not have a knowledge of this. So, see if you can find, you know, a POTS aware cardiologist in your area or, you know, have a virtual online evaluation with one of the experts that you maybe wouldn't have to travel to.
Jill Brook: Gosh, you know what you're making me so curious to know is, if we took a thousand anxiety patients, and maybe we would target the demographic that tends to get POTS. [00:23:00] I wonder how many anxiety patients we'd find with POTS. Because, you know, it seems like in the POTS and EDS and Triad world, people notice that the patients here tend to be almost of a type, kind of like, high achievers.
And I wonder if it's because it takes a certain amount of work, persistence, and self confidence to keep fighting to get that POTS diagnosis when there is a strong trend to get an anxiety diagnosis first. And I wonder how many people give into that and are in the anxiety world wondering why their medications don't work.
Christie Cox: You know that's, that's really interesting. I found some study information that, you know, like, okay, 50 percent of people with EDS have POTS. And, you know, they're studying all the neurodivergent and [00:24:00] neurological impacts that come along with this. You know, so, so they're finding that, you know, in pediatrics, 32 percent of kids that have EDS also have things like ADHD.
And then, Sweden, the largest study that they did to date in 2016, which I love the term that they use, the patient population that has an increased disease load.
Jill Brook: Lovely.
Christie Cox: Yeah, lovely. That, you know, people with hypermobile EDS or hypermobility are seven times more likely to have autism.
Jill Brook: Wow.
Christie Cox: And, you know, like five times more likely to have depression or bipolar disorder.
So it's like, you know, there's definitively an autonomic, neurological, neuromuscular component that ties these together. And I don't think there's just been enough studies. Like you said, how many people with POTS have anxiety? [00:25:00] You know, I'm really glad this, this can sound kind of strange, but as a result of the pandemic, Dysautonomia and POTS are finally getting some much overdue attention, both in media articles and awareness and recognition, and then of course in funding and future medical research, which is fantastic.
I'm sorry that it took a global pandemic for something like that to happen and all of those, you know, lives lost. But the amount of funding that's going into this onset of long COVID is huge and about time because, you know, these are symptoms that didn't start with the pandemic. There have been people like you and I that have had it for many years before that, but now there's becoming a better awareness and so medical training is talking about it and that, you know, [00:26:00] connection between the autonomic nervous system and, you know, the heart and some of these systemic things that, that are not just like a siloed specialist are getting talked about and researched and I think that's wonderful.
Jill Brook: Yeah, yeah, and we haven't mentioned Mast Cell Activation Syndrome yet, but we know that that can be part of the package, and that can also create inflammation in the brain, which theoretically may contribute to some neuropsychiatric symptoms. And there's some great research going on with that right now that that hopefully will come out before too long, but it all gets back to what you were saying about this increased disease load.
And there's a lot of things to look at before you just throw benzodiazepines at the problem. And so I really appreciate that you are coming forward to talk about this issue and and I'm sorry that the world makes you feel like...
Christie Cox: [00:27:00] Ashamed?
Jill Brook: Yeah, for all you've done, a best selling author doing all this incredible non profit work and, and the fact that you said you haven't even talked to this with a lot of your loved ones
is, you know, anyway, thank you.
Christie Cox: I mean, I, I think it, there's a lot of reasons that that's really hard. I mean, you know, we live in a hyper digital go go gadget society that rewards, you know, success as, okay, you worked more hours than I did. Oh, I have more emails in my inbox than you do. You know, I mean, it's like this, this quirky sort of system of, of, you know, approvals and, and who's successful based on what.
You know, but we have to be in demand of ways to differentiate, you know, what's quote unquote normal, and what's problematic anxiety, like someone with a mental health [00:28:00] issue, who the anxiety itself is causing them to be, you know, not able to function in their life, as opposed to, you know, something else, a differential diagnosis.
And you know, this gets really complex, but I just think that people need to be more aware to just keep digging, look a little further, and you know, this misdiagnosis maze can maybe become a little less common.
Jill Brook: Amen. So, you know, what's funny is you know, you talk about we live in a go go go world, and you have done a fair bit of go go going, even despite having a lot of issues. Let's talk about some of the other stuff you've done and where people can find it. Where do you want to start with? Your book?
Christie Cox: Yeah, I mean, I appreciate the opportunity to be able to share you know, it's not like a book plug, but it's more like if there's a resource out there that can help a family get through this challenging time, because when you get diagnosed with EDS or POTS or Mast Cell, [00:29:00] you're just lost and it takes years to become more aware, learn about it.
And, you know, and all the while you're going through like a mental health crisis of your life got turned upside down by a chronic illness that maybe stopped your work, stopped, you know, your ability to function or drive or, you know, whatever it is. And so what I tried to do was recount in my book Holding It All Together When You're Hypermobile of my personal story of kind of how it hit the fan and then what I did about it and, and the good outcomes of what I call healing habits that, that I could do.
And it was a, it was a holistic look of, okay, obviously there's medications. I mean, you know, POTS needs, you know, beta blockers and such. But there are a lot of things that you have control over, like learning how to do deep breathing to calm your autonomic nervous system, or, you [00:30:00] know, learning to prioritize your own self care.
Which is incredibly hard for women in particular, who are the caregivers, or even learning to prioritize and value restorative rest. I mean, how guilty do all of us feel when we're sitting around unproductive and like, Oh, I need to take a nap. It's like your body is telling you something. We need to learn how to listen to those cues, right?
So that's what I tried to do with my book. And I had absolutely no idea it was going to go gangbusters. I announced it and within, you know, like 24 hours it was hitting the Amazon bestseller, you know, algorithm. And I was like, what? It has nothing to do with me or my writing or the story within. It's the demand.
And the lack of information and resources that all of these people that are suffering with these things are [00:31:00] starving for and they don't know where to go, you know?
Jill Brook: Well, you're also an incredible writer, and so, I think we shouldn't sell you short. But yeah, it's a wonderful book and it's full of so many practical tips coming from someone that you can tell has been there and cares.
Christie Cox: I mean, that's what I try to do. That's kind of my personal mantra is, in my former career, I used to write about technology and, and like my expertise was taking a lot of complex information and boiling it down to something that was simple that our clients could understand. Like, for example, explaining the cloud when all that first happened.
I mean, it was very hard to explain what that was. And I sort of treat this similarly. It's like, go research, find all this information and sort of boil it down to, okay, this is the need to know, this is the things you can do about it, because you can get flooded with so much information and weeding through that you're overwhelmed and that makes it worse, so it's like, [00:32:00] let's try to simplify this into actionable, practical tips or referrals to this app or this book or this podcast, you know, it's like, there's help out there and you can help yourself.
So that's, that's kind of how I approach it in the things that I write or share.
Jill Brook: Awesome. Okay. And then after you wrote the book, you created edsshare. com, the monthly newsletter. Can you talk about that?
Christie Cox: Yeah, so as you're like me, you're doing all this research, you're trying to figure out these answers to help yourself or your loved ones or your child who has these conditions. So you amass this great, you know, library of data and I tried to kind of like summarize things and write articles. And so that started a, you know, a subscription to an e newsletter of, you know, I started it with what I called the top five and one deep dive, which was just like a list of five things of [00:33:00] like, here's a cool app to try, or here's a, you know, a product that is helpful with pain relief.
And you know, it was just that. And then I would do a deep dive into some research topic and I was getting positive response and people liking the information. So it just kind of grew and grew. And now I have several thousand subscribers and you know, they're a devoted audience counting on that information.
And so what happened to be totally honest was I had so much data that I couldn't keep it organized. You know, brain fog and all the other things. So I started a mechanism to try to organize it kind of like in a Google sheet, like, you know, let's, let's make a spreadsheet of the, you know, the things that I've either written or the resources that I think are really valuable that I found.
And so I ended up amassing this spreadsheet with thousands and thousands of things in it. And I realized [00:34:00] this is so well beyond a book. I have to find a way to put this out there so that others can have an easy search. So with some technology help and some people that were able to help me sort of put it together, I built what I call the EDS 411 Living Library.
And what it is, is it's kind of like, just like a simple resource hub of hyperlinks, of things that are everything from different categories of like research, or news media articles, or you know, helpful products, or a video from so and so doctor talking about, you know, X, Y, Z. So I've amassed this thing that has a like, nearly 5, 000 entries in it, and I created it into an app and a tool that makes it searchable by keyword or by category.
And then it also has this other feature that I'm excited about, because it's designed by the community, for the community. [00:35:00] And people have been contributing to these articles for many years. And so, there's a way that you can go onto the app, and upvote, okay, I found this like super helpful. So that over time it's going to become like the cream is going to rise to the top of what the patient community thinks is the most valuable good information.
And I just launched it earlier this summer and anyone can can access it. It's free. Share it widely. Uh, if you go to app. EDS411. com.
Jill Brook: We'll put it in the show notes if people want to link.
Christie Cox: Yeah, and so, I mean, it's an overwhelming amount of information, but if you want to go in there and say you're going to search on, you know, syncope, it's going to pull up all of the articles and information that have that word
in the content, which is a great tool because you might find answers [00:36:00] faster, which is what I believe we all need to be able to get to diagnosis faster, to get to better treatment faster, and to get to improving the quality of our lives.
Jill Brook: Absolutely.
What I love about the feature that you mentioned with the cream rising is that it lets all the patients participate in the larger mission that you have, which is getting people answers faster so that they can get back to their lives faster. And I'm really sorry that it sounds like a few years of your life was kind of taken from you.
Like you said where you're a zombie. And I can't imagine what that's like to not have memories from a few years of your life. But I'm so impressed that you have taken that experience and decided to use it to make things better for everybody who comes after you. I mean, I just love that. That's, that's beautiful.
And thank you from the whole community.
Christie Cox: Yeah, you know what they [00:37:00] say, how I feel is, you know, when I wrote my book, it was like if this helps one person, then it's worth it. And so if I'm, if I'm beyond the one person, then that's phenomenal. I'm so pleased. You know, it's never about money. When you write a book, you're not making money. I mean, you know, it's not about any of that.
It's about, I hope that my grandchildren have a better time navigating this life and being able to make decisions earlier on because they got a better diagnosis and they could work in a particular kind of job that facilitated accommodations, etc. So that they could succeed and have a better quality of life.
Jill Brook: That's beautiful. That's beautiful. Well, Christie Cox, author, advocate, fellow patient, we thank you so much for everything you've done and for sharing your story and all your great information today. Is there anything else you wanted to share with our [00:38:00] audience?
Christie Cox: I thank you for all the work you're doing and I hope that you know sharing this can can bring a shift to the narrative from like it's all in your head to more about it's all about understanding this head and heart connection.
Jill Brook: Beautiful. Well, again, thank you so much, Christie. And hey, listeners, that's all for today. We hope you enjoyed this conversation. We'll be back again next week. But until then, thank you for listening. Remember, you're not alone. And please join us again soon.
