Live & Learn Podcast Transcript Ep. 8: Australian POTS Foundation

RECORDED Mon 18 Nov 2024 

SUMMARY KEYWORDS: Postural Orthostatic Tachycardia Syndrome, autonomic nervous system, chronic illness, delayed diagnosis, medical trauma, school refusal, mental health, family impact, COVID-19, long COVID, diagnostic criteria, school attendance, individual learning plans, social engagement, puberty effects, stress predisposition, chronic fatigue, emotional stress, adolescent independence, menstrual triggers, confirmation bias, endometriosis connection, school challenges, medication management, invisible illnesses, school resources, diagnostic delay, psychosomatic domain, societal impacts, call to action 

SPEAKERS: Marie-Claire Seeley, Megan Gilmour 

 

Megan Gilmour  00:00  

This episode is proudly brought to you by the TPG Telecom Foundation, dedicated to creating opportunities to improve the health, wellbeing and education of Australian communities in need.   

  

Hi, I’m Megan Gilmour, MissingSchool co-founder and CEO, and this is Live&Learn. This is the podcast that unearths insights at the intersection of health and education, building a powerful alliance to keep kids with complex health conditions connected to school from anywhere. The podcast is recorded on Ngunnawal land, and we acknowledge and pay respect to the traditional owners of this land and the land on which you’re listening.  

  

Megan Gilmour  00:49  

Welcome to our weekly webcast, a place to zero in on the interplay between health and education and to amplify the voices of those supporting school students to navigate their educational journeys despite complex health challenges.   

  

With us today is Dr Marie-Claire Sealy. Marie-Claire is a clinical nurse researcher and the volunteer CEO of the Australian POTS Foundation, which she founded in 2021 to improve recognition, diagnosis and treatment for Australians living with Postural Orthostatic Tachycardia Syndrome – POTS.   

  

Her journey with POTS began in 1994 after a viral infection, leading her through a long diagnostic journey that now motivates her clinical work, advocacy and research. She was instrumental in developing a multi-disciplinary clinic in Adelaide, offering holistic assessment and management of POTS with a commitment to raising awareness and educating healthcare professionals on autonomic dysfunction. Welcome Marie-Claire, we’re so excited to have you on Live and Learn.  

  

Marie-Claire Seeley  01:59  

Thank you, Megan, thank you for that introduction, and it’s great to be here talking about this really important issue for young people   

  

Megan Gilmour  02:08  

Indeed, so Marie-Claire today we’re here to talk about supporting school connections for students with complex medical and mental health conditions, and specifically POTS. So, we’ll kick off with my first question. Tell us how POTS impacts kids, and why it’s something every Australian needs to know and care about.   

  

Marie-Claire Seeley  02:31  

Sure. So, I think probably the best place to start is, what is POTS? Some people have heard of it, and certainly it’s becoming more known in the community, but it is a condition, as you said in your introduction of the autonomic nervous system. So that’s a system that keeps all our unconscious functions in check.   

  

So, while we’re not thinking about things, our heart beats, our blood pressure changes, our breathing keeps going, our gut moves and it digests, and our bladder, we don’t need to think too much about emptying and so all these things are regulated by this autonomic nervous system. And when that nervous system is dysfunctional, you can imagine, because of all the unconscious functions we have, people become very symptomatic of lots of different unusual symptoms.    

  

Postural Orthostatic Tachycardia Syndrome is the long name for it, but we’ve shortened to POTS, and it is a condition that affects predominantly young women. And by young we mean women in their childbearing age, but we do see a lot of teenage girls, particularly come out with this condition. It does affect men, about 10% of people with POTS can be male, and it affects them in the same way, but we do have this sex discrepancy in terms of how people are affected by the condition.   

  

And so, POTS has an incredible impact on people’s quality of life, and that is because it affects their ability, particularly to do tasks such as standing exercise, and it can affect their cognition, so they have a lot of difficulty with concentration. So, you can imagine the impact on young school adolescents when this condition strikes them.  

  

Megan Gilmour  04:30  

Yes, so that is something every Australian needs to know and care about for sure. And I know we’re going to dive deeper, so I won’t say any more at this stage, but I have some I’ve jotted down some notes.   

  

Many people probably assume things about POTS if they’ve heard of it. What’s the million-dollar question that you get from parents or loved ones when their child, their young person, and predominantly girls, by the sounds of it, experiences or is diagnosed with POTS?  

  

Marie-Claire Seeley  05:03  

Yes. So almost universally, the first question we’re asked by parents, and bearing in mind that people with POTS have a long time from the onset of their condition to when they get diagnosed. So, on average in Australia, that time is about eight years for girls and about four years for men, which is an interesting disparity that we’ll maybe delve into later.   

  

So, by the time a lot of these people see us, they’ve lived a long time with the condition. And in the case of people that get this post virally, you know, it’s been a very long stretch from when they got that initial virus. And another thing, people need to know is that this comes on quite commonly after COVID infection.   

  

So almost universally, the question is, when will this go away, and will I get better? And you know, that’s unfortunately something that we can’t answer very well, and that’s for historical reasons, and those historical reasons really are based in how our system has been quite gender biased.   

  

Women with chronic conditions that aren’t easily identifiable were often dismissed as having hysterical kind of personalities, and unfortunately, that stigma even sticks with us till today, and so a lot of these young girls are dismissed for a long time with this condition.   

  

But historically, the big problem with that attitude was that nobody actually researched these patients for a long period of time, so we have no really substantial data that proves or shows whether, how many people grow out of this condition, which is a term that’s often used, how many people spontaneously just get better, and how many people live with long chronic illness from it.   

  

What we know from our clinic and from many of the experiences of practitioners around the world who are in similar circumstances as ours, with large populations that they treat, is that we don’t actually see many people cured of POTS. And in fact, we would say that we very rarely see people cured of POTS.   

  

What we do see is people getting somewhat able to manage their chronic condition and return to some new normality, and that their condition fluctuates throughout their life, so they might have periods where they’re doing a little better, and then they might have another crash that occurs when they have another virus, or they have a pregnancy, or they, you know, have another stressor. So that really is a question we get all the time, and I wish I could answer for people, but we can’t, at this point in time,  

  

Megan Gilmour  07:58  

There’s just so much there. And I guess, based on the fact that, when we’re looking at the data, if there are more girls, more females with who experience POTS, then by virtue of that fact alone, there are going to be more girls disbelieved for a long time about their symptoms.   

  

Marie-Claire Seeley  08:21  

Yes, and our research. So, I’m a researcher as well as the CEO of the POTS Foundation, and we’ve undertaken quite a bit of research in Australia and we really do quite well in that area, in the small team that we’ve got. But unfortunately, our research does really show that these gender biases are stronger in Australia than they have been shown to be internationally. So that means that the girls in Australia are having a lot longer delay in diagnosis and experiencing more barriers to appropriate care than their counterparts in other Western countries, which is not something for Australia to be very proud of, unfortunately.  

  

Megan Gilmour  09:06  

No, it isn’t. And again, I know we’ll get more into this now, because I could really just dwell here for a while. But I do just want to put a bookmark here in this post-COVID era as well. And I’d want to put a bookmark here about school non-attendance, because there’s some interplays there that we can investigate when we get to the What about school part.  And this idea of school refusal that’s been this framing of non-attendance in this way, and how it might relate to these young people.   

  

So, what’s the most important thing that you want people to know when their loved one, or themselves, or they themselves, experience symptoms or, you know, that diagnosis moment?  

  

Marie-Claire Seeley  10:11  

Yes, I mean diagnosis, as I said before, is a really vulnerable time for these people. They’ve often been – the whole family has been – through a lot of medical trauma. They often have spent a lot of time going to multiple specialists and doctors and being dismissed, and worse than dismissed, you know, often misdiagnosed with other conditions, and particularly in the case of young women, they’re at high risk, it would appear to us of being misdiagnosed with things such as eating disorders.   

  

Now we have to be very careful. Here, because both eating disorder and POTS can coexist. But one of the symptoms of autonomic dysregulation, or a problem with your autonomic nervous system, is that people often – one of their first symptoms is gut symptoms, and those gut symptoms revolve around feeling nauseous when you eat, feeling completely full all the time. So even a glass of water can make them feel bloated and full.   

  

They may have quite severe constipation, or they may get those irritable bowel type symptoms of swinging from diarrhea to constipation. And you can imagine any young girl in particular, but we have the same problem with young adolescent males, particularly, I think maybe a growing issue with young adolescent males is, you know, there is a body consciousness there, but often there is this issue that they have a low appetite. They’re not necessarily refusing food. They don’t feel that they can eat because they feel incredibly unwell. And if anyone’s ever experienced nausea, you know what that is.   

  

So, they typically do lose weight, they might disengage in sport activities, which can make their gut even worse. And so you get this kind of, you know, slide down the hill into poor nutrition and so on and unfortunately, when young girls present to GPs with, you know, loss of weight, refusal to eat, or at least reducing oral intake, you know, it is the case that that probably the first stop in thought of what’s going on relates to an eating disorder, rather than autonomic nervous system dysfunction. So, you know, there is a high risk for them to actually be misdiagnosed and miscategorised.   

  

And there are simple ways for us to discriminate those two different disorders if they are separate, and that is oral intake reduction due to POTS is rarely around body image. So, if you actually ask the young adolescent, do they think about their weight all the time? Are they preoccupied by food? And so on. Their answers will be quite different if their condition is driven by POTS, than eating disorder.   

  

That’s a very long, convoluted way of giving an example of where it’s really important to discriminate those kinds of issues and to give an example of how these people may go through medical trauma. We often see young girls and some adolescent boys who have spent many years under eating disorder units. And of course, the programs have not been entirely effective, because their primary issue is not an eating disorder.   

  

So, they’re very defensive and understandably mistrustful of the medical system, and often can have secondary anxiety and depression effects from that. So often, our first consult with people once we really identify that this is an autonomic nervous system issue, and we do that by a battery of different clinical tests that we do. There are no blood tests for POTS. We have to look at the way the sweat functions, the way the heart rate functions and the blood pressure, and we can make a diagnosis from that.   

  

Often, it’s just about telling them this is not in your head and it’s not your fault and leaving a bit of space for them to come to terms with this sudden change in, you know, years and years of seeking help, and then finally, someone’s turning around and saying the opposite of what everyone else has been telling them.   

  

And we often kind of just spend a lot of that first consult really trying to explain why their nervous system is so important and how all these symptoms that they’ve got fit in to their picture of their symptoms, and that’s often a real validation point for them.   

  

That’s often when you see the tears falling in the family, when they go right now, we understand why she couldn’t stand, you know, and do the cooking, because her blood pressure wasn’t maintaining and she was going to faint, and why she gets all the dizziness and why she gets all the headaches, and why she has disengaged from sport and social activities.   

  

And suddenly it’s not school refusal and eating refusal and social withdrawal. Suddenly it’s, oh, actually, I have this organic condition that explains all of my symptoms, and it’s not my fault.  

  

Megan Gilmour  15:28  

Oh, I feel relieved to just hearing that you’re there doing that. But for these young people, it must be, they must be doubting themselves and believing what other people are saying, and then trying all the things that they’ve been told to no effect or to make it worse, probably. And just how, how difficult that would be to everything. And we’ll just flag again that that we’re talking about medical trauma here, and that doesn’t necessarily resolve with a clear diagnosis, either.   

  

Marie-Claire Seeley  16:07  

No, no, and particularly when you’re talking about adolescents. I mean, this story is mirrored in older women as well, so we often see people in their 20s and 30s and 40s.   

  

But I think the really crucial thing to remember about adolescents is it’s a time of incredible change in their bodies. And, you know, POTS can initiate just through that pubescent kind of change, but it’s psychologically a really difficult time in terms of identity and for a teenager to suddenly be struck down with something that disengages them from what their peers value, so social engagement, and, you know, energy and being engaged is just like a secondary trauma to adolescence, particularly.   

  

They are still trying to find out who they are in the world. And then now we’ve thrown on top of that this whole conundrum of this medical issue that you know takes them away from what they really are seeking, and that’s friendship and peer support.  

   

Megan Gilmour  17:13  

Yes, and we hear this across all these conversations so different illnesses, diseases, medical conditions, health conditions that, despite how things are presented by holders of data, medical and mental health issues go together, and it’s not, you don’t have, you know, a mental health issue, and there’s no physical effects.   

  

And certainly, when there are significant health issues or medical concerns, it is almost always there’s associated anxiety and mental health effects or mental illness, and that interaction is so important to understand, which I’m sure we’ll cover a little bit more as we move on. Such an important point that we continue to make through our work, when we hear people say, ‘Oh- we didn’t realise that that you did mental health as well as you know,  

  

Marie-Claire Seeley  18:19  

As if you can separate them   

  

Megan Gilmour 18:21  

As if you can separate them indeed.   

  

Marie-Claire, we’d love to know what brought you into the world of POTS, if you’re happy to share that with us,  

  

Marie-Claire Seeley  18:33  

Yes, sure. So, I actually came down with POTS myself back in 1993 I was a young 24-year-old at the time – you can work out my age now!  

  

I certainly had – what we know about people with POTS is that generally, that the large majority of them have what we call a phenotype, or a phenotype, and that’s when you can kind of put people into a category and say people that are like this, are more likely to get this disorder.   

  

And the thing that is common amongst people with POTS is there tends to be a tendency towards having what we call connective tissue flexibility or hypermobility.  And that’s people that typically go in and be end up being dancers, they end up being swimmers, and they’re very hypermobile.   

  

But that connective tissue hypermobility also makes them a little predisposed to getting faint. You know, all you have to do is think back to school and think about the young girls that were, you know, great dancers that couldn’t stand out on the sports field for longer than 10 minutes because they might get a bit faint. And typically, this is more common in pale skin women. And indeed, you know, anecdotally, people with red hair, and we used to always think, well, they just can’t tolerate the sun and so on.   

  

So, I came from that background. I was very athletic, great swimmer, but also, you know, not great in the heat. And so, I had a little bit of that background, but you know, nothing that really interfered with my life. And in fact, I was very, very energetic, lived overseas, worked in humanitarian work, and was very athletic.   

  

And then my husband and I were recently married, and we both came down with a virus. And that virus, we still don’t really know what it was, but it was, you know, it was a pretty significant event. My husband actually ended up in hospital for several days and I developed, I mean, I remember the very moment it happened. I just suddenly got this incredible rush when I went to stand up, I just felt like my body was on fire. I couldn’t hear anything, I couldn’t see anything, and I knew I’d faint if I didn’t sit down. It went away momentarily. I stood back up. There it was again, and I couldn’t breathe.   

  

I’d never had any anxiety issues. In fact, I was probably the opposite. I was, you know, pretty tough country girl, and nothing bothered me, kind of thing. But I felt like, when I stood up, what I would imagine a panic attack was like, you know, flushed face, heart just racing, couldn’t breathe, couldn’t talk, would lose my hearing and my vision, and that just never really got better for months.   

  

And, you know, I would have some better days, but mostly I was just incredibly fatigued. I had a lot of gut problems, which, of course, we were living in a foreign country we just put down to, you know, I had the wrong water or, you know, something had got in our food, but it just went on and on.   

  

I was losing weight and after a while, I realized, I wasn’t medical back then, and I hadn’t done my nursing training, but I realised that my heart was incredibly fast, and so fast that we couldn’t even count it sometimes. When we could count it was up near the two hundreds.   

  

Megan Gilmour  22:10  

Wow.  

  

Marie-Claire Seeley  22:10  

And we thought, well, that’s not right, you know? And so, we went off to see a doctor. They did all the usual tests. Came back with, well, you’ve got very low blood pressure. Maybe you, you know, you’re just a little anemic, but there’s no real answer.   

  

And we were living in in the Middle East at the time, so we decided to come back to Australia to see a doctor. And, you know, we saw three doctors in that trip, every one of them told us the same thing, and they didn’t really tell me. They just told my husband in front of me, she’s clearly a young, anxious woman. You need to bring her home where she’s not so stressed, which, you know, to me, was just a complete anathema.   

  

I was very, you know, independent, strong. Had lived two years working behind the Iron Curtain after the fall of Berlin, and, you know, nothing bothered me in that kind of anxiety way. And he was somebody who had never, ever met me before, just making this assumption.   

  

And I remember saying to one of these doctors, okay, let’s just start again here. When I’m laying down, my heart rate’s fine. We can all agree, yep. And when I stand up, it’s, you know, racing up to 200, I can’t see, I can’t hear, I can’t do anything. And he’s like, yep. And I’m like, and you’re telling me that’s anxiety? And he’s like, yes. And I’m like, okay, well, it doesn’t make sense to me that if I’m anxious, I’m only anxious when I stand up. How do you explain that?  

  

Megan Gilmour  23:46  

I hope people can’t see my face. I’m pulling a lot of a lot of faces here.   

  

Marie-Claire Seeley  23:54  

Yes, but there was no answer to that. And it was my first revelation that, you know, that maybe common sense wasn’t a requirement to be a doctor. I mean, that’s really how I felt. I just thought these guys are idiots. I mean, it’s plainly clear to me that if anxiety was the cause of this, I’d have this problem whether I’m standing or laying or whatever.   

  

Also, it was very clear that this came on immediately after a very, you know, significant infection, that put my husband into liver failure at the time. In any case, it was pre-internet age. I wasn’t able to do anything at that point in time in terms of my own research. You know, your own research was finding some kind of encyclopedia and seeing if there was something about it which there wouldn’t have been. So, I had to learn to live with it.   

  

I was unwell, really, for about significantly, for about 18 months, you know, I would have good days, and then I’d have very, very bad days. And unfortunately, with POTS, you get a lot of fatigue and a lot of brain fog. And you know, if you’ve been an active person, then you get a lot of guilt, because basically, the only thing you feel you can do is lay down, and then it just appears that you’re lazy.   

  

People look at you, think you’re fine, and why aren’t you coming out? You know you could do it yesterday, why can’t you do it today? So, they were all the things I faced then, and then, actually, we moved to England, which is a colder climate, which probably helped, and I started to get better.   

  

And then I actually had my children, and during pregnancy, I actually was a lot better, and that’s not unusual. Some people get worse with POTS in pregnancy, but a lot also get better because you have a lot larger blood volume during pregnancy, and that can help with a lot of the symptoms.   

  

So, I just went on my merry way thinking, well, I’ve got a weird condition that nobody will ever know what it is, but I’m never going to talk to another doctor about it, which is essentially what happened. But I had some problems with the condition over my lifetime. I struggled to really kind of work consistently. It wasn’t ever the case that I just quit on a job because of my POTS. But, you know, I certainly lost the ability to be able to do some of the more rigorous jobs in terms of nursing because of my fatigue and night shift and so on.   

  

I then went into research as a clinical nurse. So, I went and did my education as a nurse after my children were born, and then I went into doing some clinical education stuff, and then research. And my research was in a completely different area, but during that process, I started to really look at what maybe my condition was.   

  

I found that this condition POTS had been named back in 1993 although it’s been described in literature for over 100 years, we’ve known about this kind of post viral illness, and I thought about studying it. But number one, there was no one in Australia that I could find that knew anything about the condition or was interested.   

  

And number two, I was an emergency nurse, and I knew what the medical profession thought about young women who presented with all these symptoms. I heard the comments that were made about women who would come in with their fainting spells, and I just thought, you know, I’m one person. What’s me researching this going to do? So, I left that to the side.   

  

And then one of my own daughters, who had had a lot of issues with her joint hypermobility and dislocations and quite severe problems with that, became unwell at the age of 14 with a gastric virus, after which she really just presented with all the same POTS symptoms, but probably worse, and she was 14, and we’re struggling with, how are we going to get her through school when she’s fainting all the time, she’s vomiting all the time?   

  

We went to seek help; the same answers came back. This is just a young, anxious woman. She’s food refusing. And I just thought, that’s enough, you know, so I went and did some research, actually found someone who knew about POTS, and he took on her care, and we managed her a lot better.   

  

And then, unfortunately, a few years later, my third daughter, also got a virus right at the start of COVID, and the same thing happened to her. By that time, I’d done a lot of research, and I’d found that there was a specialist in Australia in Adelaide, where I was living, who had done research into POTS.   

 

And so, I got her in to see him.   

  

She was in a on an elite athlete scholarship at a university, and she couldn’t do any of her sports. She was so affected. And when we had that consult, it was really this doctor, so Dr, he’s a professor, Dennis Lau, who is a cardiologist in Adelaide, and he realised, you know, instantly, that I knew a bit about POTS because of the discussion we’re having in the consult.   

  

And then he asked me a bit more about my background, and he said, look, if you’re ever interested in research, come and talk to me. And we actually set up a meeting after that to have a discussion. And I went back and spoke with him a few weeks later, and it was at that meeting he really challenged me.   

  

He said, no one’s looking after these people. There’s no consumer group, there’s no research about it. I can’t send these patients to anyone. I don’t have the time to give them the education they need. They’re all desperately sick. They’re some of the sickest patients I see, and I’ve got no answers for them. You know, we need help, and your help.   

  

And he also challenged me that it was really my responsibility to really consider helping in terms of research, so that the next generation didn’t have to go through what I’d gone through. And it was COVID, you know, everybody was changing their lives. So I did, and I went and enrolled in a PhD. I helped Professor Lau set up a multi-disciplinary clinic, which now has seen over 2000 patients in Adelaide.  

  

Megan Gilmour  30:14  

Thank goodness.   

  

Marie-Claire Seeley  30:15  

So that’s a very long way of explaining how I ended up into this area.  

  

Megan Gilmour  30:20  

So that’s- that’s incredible, and, yes, we’re all so grateful that you’re doing this because –  just such a terrible situation for people with nowhere to go, and if they’re believed, if they’re believed! So, thank you for sharing your personal lived experience.   

  

And I have my next question, but I just want to put a little quick question in, does this mean that, when I say, does this mean – your family story, does this mean that there’s a genetic predisposition to POTS? Is that, is that something that might be sitting in the background, and this virality triggers, can trigger something?  

  

Marie-Claire Seeley  31:13  

Yes, well, again, we don’t know, because we don’t have enough research, but in terms of evidence and anecdotal evidence, yes, we would say, through our clinical registry, we can see at around about 10% to 15% of people have a family member with POTS, and you do see higher clusters of it.  

  

So, you’ll see particular families where it’s really rampant in the family, and they almost always are these people with connective tissue issues so very hypermobile, and maybe issues around things like their skin being very thin and having vascular disorders and so on. So, we would say this is hereditary, but we don’t have a gene that connects – but nobody’s actually gone and looked for the gene, because that costs a lot of money.   

  

But we get very broad – what we say about POTS is that it’s very heterogeneous. That means there’s probably a lot of underlying causes, and there’s this common diagnosis at the end, but the actual causes underlying are probably multi factorial, which means in research that you’re researching very different populations.   

  

It’s because we don’t have a biomarker for the condition. We’ve probably got a whole big, broad group of people that we’re including in a diagnosis, and that makes it very hard to determine is there a genetic cause for this? You know, if we go test the genes, we’re probably looking at a very diverse group of people. We do probably need to focus more on these groups, where we see clusters of POTS.   

  

And the other point on that to probably hit home is that we see a lot higher amount of celiac disease in these genetic or hereditary linked groups and in POTS in general. So, in our POTS population, the rate of celiacs is at least four times four to about six times greater than the general population. And celiac is definitely a genetic disorder. We know the genes for that condition so that suggests to us that there might be a gene underlying that links this condition,  

  

Megan Gilmour  33:32  

Yes, it’s fascinating and frightening at the same time. Thank you once again for giving your time, energy, knowledge and care to this cause.   

  

Knowing all that you know, what’s your biggest hope for kids with POTS and their families and loved ones when they’re navigating POTS?  

  

Marie-Claire Seeley  34:04  

Yes, I mean, you know, when you when you’re a parent of one of these kids, your biggest hope is for a cure, right? With my realist hat on, you know, sitting in the research clinical space, my biggest hope is that they navigate the complexity of the condition as a tight family group, that they get good support for each other, and that they come to some ability to be able to manage their condition and create what I call a new normal life.   

  

You know, as we talked at the start, a lot of these people have lost everything in terms of social connection. Sometimes a family, or very often, a family member, has to stop working to look after them.   

  

So really, our goal in treatment at the moment, which is very much centered around management of symptoms, is to give enough support that these kids and these adults are able to re-engage in some way in their society kind of role, and that they can take back some of that which the condition has taken away from them in terms of life, goals and quality of life.   

  

Megan Gilmour  35:19  

Quality of life.   

  

Marie-Claire Seeley  35:20  

Yes, exactly. And that’s a long process, you know? It’s like death and grief. It takes a lot of help and support and time to navigate your way through the grief of losing what you thought your life was going to be at the age of 15-16 and coming to accept this change in your life.  

  

Megan Gilmour  35:43  

Yes, and I think this is another thing that’s very common across where there’s a diagnosis that occurs at some point in your life, I guess, as opposed to from birth, where you’re going along, and then, as you say, that dream, hope and wish or the way that you imagine your life changes radically.  And again, we find ourselves back in the trauma, mental health territory as we raise that point.    

   

So, we’ve talked about this, these misconceptions a little bit already. What are some of the common and perhaps frustrating public misconceptions about POTS? And how have you seen these impact families and that might include people don’t know about it – that’s the misconception – it doesn’t exist. Over to you.   

  

Marie-Claire Seeley  36:42  

Yes. I mean, firstly, POTS hasn’t been well known. I think it is gaining a lot more understanding in the general community. You know, there’s been lots of media articles about it. Quite famously, in the last Olympics, you had some of the really star Olympians come out and say, ‘Hey, I’ve lived with this condition POTS for 10 years.’  

  

I believe Beyonce’s Sister has come out and said that she has POTS after having COVID infection. About 10% of people who get COVID get long COVID, and about 80% of those will have POTS. So, it’s a pretty common condition there. So, we have a lot more general public understanding of the condition.   

  

I think one of the biggest problems for people that don’t live with a person with POTS is to understand how this person can look fine. And generally, when they do see them, it’s on a good day. So, this person’s interacting in a normal way, and then, you know, suddenly they kind of disappear or don’t attend other functions.   

  

And so, a lot of the misconceptions are really based around misunderstanding of how that can be. You know, is this person putting it on? Are they just trying to avoid doing activities? And you know, we often have to battle that misconception when we’re talking to family about diagnosis. It might be that that conception is even in the family, you know, that the father or their mother is going well, she’s just lazy, because if she can do it one day, why can’t she do it the next day? We often get that from schools, you know, why can she play sport this day but not the next day?   

  

So public misconceptions are very much based around what people perceive an illness to look like, and we expected an illness to be consistent. You know, somebody’s in a wheelchair and they’re paralysed, and they don’t change right. That’s what disability is in most of our conceptual frameworks.   

  

But it’s very hard to translate an invisible illness that you can’t see, and one that fluctuates so incredibly diversely, so literally, from day to day, people can have an incredible swing in their health.   

  

And so, misconceptions from that are translated when people can’t see what they expect to see, they start to come up with other theories for why they exist. Well, they look like a depressed person. Depressed people do that. They don’t get out of bed one day and they do the next, you know. Or they’re lazy, you know, because all teenagers are lazy, you know. So that’s our biggest battle –  

  

Megan Gilmour  39:21  

And that’s traumatic in itself, isn’t it? That not being believed for something that’s occurring or existing for someone is – while all of the symptomology is there, and all of the experience and trying to cope with the thing itself, people to tell you that you’re making it up – would be extraordinarily difficult   

  

Marie-Claire Seeley  39:44  

Yes   

  

Megan Gilmour  39:44  

Especially for a young person, because they’re not as developed in their agency as well, to be able to represent themselves and you know you can, when you mentioned that example of, you know when she’s washing up, she says she’s going to faint. And I can just imagine a parent, possibly even me saying, why does this happen when you’re standing up at the sink! You know?   

  

Marie-Claire Seeley  40:14  

Yes, it is the ultimate. I mean, the term wasn’t around when I was younger, but gaslighting, you know, the kind of definition of that is really true. And I actually went and looked back in my own – I was writing, actually a piece on my journey, and I found my old diaries back from when I first got POTS.   

  

And, you know, it was interesting to read those over a year and see my own kind of gaslighting that came from what others were saying. You know, maybe this is just me, maybe I’ve just become lazy, you know, I was writing those things when I was having bad days, and then when I was good again, I would write, well, that was just stupid, you know, I was clearly unwell. I don’t know why I keep, you know   

  

Megan Gilmour  40:58  

Yes, the vulnerability of illness, though, the vulnerability of being unwell. And I mentioned agency, but also when you’re symptomatic and you’re not well, having zero energy to be able to prosecute your case for the reality of this and so really being victimised, along with having what is a very serious health condition.  

  

Marie-Claire Seeley  41:29  

And that becomes one of our primary concerns about adolescents in this space, is that, you know they are they are vulnerable, and there is a lot of gaslighting, and it’s very hard to explain their condition to people, and they’re always defending themselves, and if they don’t have a strong sense of agency, which most adolescents would not have, or if they don’t have a strong sense of agency, they tend to withdraw from everything. And then you have a lot of mental health overlay that occurs with that.   

  

If they do have a strong sense of agency, sometimes the only way of them really putting forward that agency is to take on an identity, a very strong identity of illness, and that can equally be damaging for them, but that’s the only way to fight their way out of this chaos of people, you know, telling them all these things, their own identity being confused.   

  

And so sometimes the best way to come out of that for them is to grab hold of an identity that is stable, and that’s an illness identity which, you know, isn’t that helpful either. You know, it’s very hard for adolescents in their space.   

 

Megan Gilmour  42:44  

And these things are lifelong. I mean, in this case, POTS is intervening at a developmental stage as well that will have long lasting effects and changes to your developmental trajectory, as you said, and your identity.  

  

Marie-Claire Seeley  43:09  

And your education, and your education pathway and your income for the rest of your life.  

  

Megan Gilmour  43:16  

Which is right where we’re about to head now. How many Australian children and youth are living with POTS right now?  

  

Marie-Claire Seeley  43:26  

We actually don’t know again, because, number one, the research wasn’t done. But number two, we track the prevalence of illness anywhere in the world using what we call the International Classification of Disease code. Those codes every time someone goes to a hospital, we can track using the codes for the illness. You know, how many people have got it.   

  

The code for POTS was actually written some years ago, but it’s up to individual countries to adopt the code and Australia, as until now, has chosen not to adopt a code for POTS. America adopted it in 2022 so we’re starting to get a little bit of data from America that’s showing how prevalent the condition is.   

  

So, we can only extrapolate from what we see in things like how many people who get a COVID infection get long COVID and how many of those people have POTS. And there was a big article recently that was published that looked at 12,000 people after long COVID after COVID infection, and from that, we know about 3.5% of the population get POTS after COVID infection.   

  

Now there’s a whole host of other things that causes POTS, including Epstein Barr Virus, puberty, changes in hormones, pregnancy and trauma, concussion. So, from long COVID alone, or from COVID alone, we know 3.4% or 5% of the population will get POTS.   

  

But of course, you can almost double that for women, because women are the higher risk. So, it’s not 3.4% of the male and female population. It’s about 6% of the female and 3.4% of the male. So, it is a really common disorder. If you think that sounds like a low number to your listeners, that’s a really high number. It is a lot of people.   

  

We project that over 800,000 probably closer to a million people in Australia, possibly living with some form of POTS. And like any condition, we do see a spectrum of this disorder, but it is way, way more common than any health departments or professionals are giving credence for, and our clinic is an example of that. We live in little old Adelaide, and in four years, we’ve seen over 2000 patients with this condition.  

  

Megan Gilmour  45:55  

So, people would be traveling to Adelaide to go there, right?  

  

Marie-Claire Seeley  45:58  

Yes, that is true. I mean, it’s still predominantly people from our region, area, yet people come interstate.   

  

Megan Gilmour  46:05  

So, I just want to cross check something. Are you saying that Australia, to this moment, has not adopted the ICD code?  

  

Marie-Claire Seeley  46:18  

Well, in one month’s time, I can give you a clear answer on that. We lobbied the government back in 2022, and 2023 to nominate an ICD code for POTS being adopted in Australia. Unfortunately, Australia’s process of this is really slow comparative to other countries. So, we have a three-year cycle, and everybody else does it in a year, or at least other major Western countries.  

  

We did find out from the governing organisation IHACPA that their committee did recommend that POTS be put forward for an ICD code revision and that that be included in the new ICD Code Book that comes out around about July in 2025.   

  

We are still waiting to hear if that was ratified by the board. We believe it probably was. We don’t believe there was much opposition to it. So, the short answer is, we hope, with all things crossed, that in 2025, in July, Australia will adopt the international code for POTS, and POTS will have its own specific ICD code.   

  

Now what that will mean to the individual is almost nothing for some years, but over time, that will give us a very good indicator of how unwell these patients are, how often they’re being presenting to emergency, how many medications they’re using, all those things.   

  

Megan Gilmour  47:47  

Yes. Well, we’ll keep our everything crossed as well that that makes its way into the code book. Data, huh!  

  

Marie-Claire Seeley 48:01  

Yes, Data!   

  

Megan Gilmour  48:02  

We covered this next one, feel free to add to it, or just if you’re happy with what you’ve said, that’s fine too. Is there a risk of delayed diagnosis? Or in most cases, is POTS picked up easily?  

  

Marie-Claire Seeley  48:17  

And, you know, just to expound a bit, actually, on my last point about that, clearly, it’s very delayed in Australia. That’s what our research shows. We actually have a new article that is under revision at the moment and hopefully will come out in a peer reviewed journal soon. We were able to look at the diagnostic delay in stages over the last four years and what we found was that people who got POTS from COVID had a relatively expedited diagnostic journey.   

  

So basically, they got long COVID, three months later, because there was a lot of awareness in the social media groups, they started seeking help, and GPs were getting fed a lot of information too, and starting to understand, hey, these people get POTS, so we’re going to test for it.   

  

So, the people with long COVID had a lot shortened diagnostic delay. So, you know, they were really only delayed by the access to care. They knew probably they had the condition they just had to wait on a long waiting list to see our clinic or one of the other ones. So, we are hopeful that it is changing, at least in that area, but we need a lot more publicity, funding and education for both clinicians in the community, but also the general public around POTS.  

  

Megan Gilmour  49:45  

Yes. So COVID has helped the speed of diagnosis in summary?  

  

Marie-Claire Seeley  49:53  

I think, you know, a worldwide pandemic has a silver lining. That is, that these conditions that were ignored in isolation because little pockets of endemic, you know, viruses, have happened for generations, and every time these little pockets are ignored.  

  

But when there’s a global pandemic like this one, which is data rich – so, our last pandemic 100 years ago, probably wasn’t as data rich – we weren’t able to sophisticatedly collect all the data. It is just too overwhelming – the evidence of how many people are affected by this condition is too overwhelming.   

  

And so, despite there still being naysayers, and particularly I found in Canberra, still a few people saying that it’s just hysterical women around the place.   

  

Megan Gilmour  50:43  

Oh – right?!  

  

Marie-Claire Seeley  50:44  

That is, you know, the data is going to show that to be silly.  

  

Megan Gilmour  50:49  

I’ll just add there, because, you know, women wake up every day and say, I would really like to pretend I’m unwell, because this looks like such a joyful ride and something to really embrace, NOT!  

  

Marie-Claire Seeley  51:09  

One of my first long COVID patients who I ever dealt with was probably the most severe we’d ever seen. She actually got COVID in France in the first wave and had to be repatriated, and she, to this day, is profoundly affected by her condition and had severe, severe POTS. She was nine months in hospital with no real diagnosis apart from that kind of functional diagnosis of, you know, maybe she just needs to get out of bed.   

  

But she was, she is a very clever woman. Was doing a PhD at the time, and multiple times she said to me, what makes these doctors think that anyone would like to go from living I mean, she had sailed around the world, her PhD was in ecology and birds. I mean, she’d lived this incredibly adventurous life, and somehow someone standing at the end of a bed saying everything that you’re going through is because you don’t want to get out of bed.   

  

I mean, it’s just incongruous. It’s not believable. Doesn’t pass the pub test, and doesn’t pass what we know about women, does it? I mean, what do we know about women, they named it man flu!   

  

Megan Gilmour  52:26  

Yes! But also, you know, there is another option here, which is to say, we don’t understand what’s going on, that’s also an okay answer. That’s data, that’s a place of curiosity, that’s a place to investigate from. And I think you probably agree with what I’m about to say, which is, it’s complex. So, if somebody said, this is hard to diagnose, I don’t know what’s going on, that wouldn’t be unexpected. But to say to ascribe that to mask a lack of knowledge or certainty, is unacceptable.  

  

Marie-Claire Seeley  53:18  

Absolutely. And you know, we agree with that entirely. The right place to come to with this condition, for a lot of physicians is going to be, I’m sorry I don’t understand it entirely, you know, and that’s 100% fine. We can’t expect physicians and clinicians to understand everything, and especially a complex condition that even those who worked in this area for decades still didn’t really understand how to manage.  

  

Megan Gilmour  53:46  

Yes, and this is what I worked out from my lived experience. I mean, we had an amazing physician for my son. I don’t know if you’re aware that my journey with MissingSchool started with my son having a critical illness of two years. He had a bone marrow transplant, but also, for the longest time, no one knew what was going on. It was just the symptomology. And at that time, you could only test one gene at a time. Since he became well again, you know, the whole human genome mapping has occurred and so on.   

  

But what I discovered through my journey is that any medical situation that is complex is often really hard to diagnose, and so you’re trying to eliminate things, rather than being able to say, you know, with conviction that it’s something, it’s this, or it’s that.   

  

It’s a process of elimination, and that can be incredibly frustrating and traumatic on its own, including testing different treatments and those treatments not having the desired effect. But to say that you’re making it up is that’s an in another category, all on its own?   

  

Marie-Claire Seeley  55:06  

Yes, exactly.   

  

Megan Gilmour  55:07  

Yes. I’d be able to have a lot more to say about that, but I better ask the next question.   

So, what kind of complications do kids with POTS face? So, we’ve talked about a lot of things there. What stands out for you?  

  

Marie-Claire Seeley  55:27  

Yes, and you know, just really leveraging off our last discussion. It is a complex condition, and it presents in different ways in a lot of kids. Now, the actual diagnostic criteria for POTS is based around the tachycardia, so the fast heart rate when you stand up.   

  

But I think if you’ve surveyed, and we kind of have, we have done this in one of our research all the POTS patients and said, what’s, you know, what’s the most troubling thing about your condition? No one’s going to say, my heart rate, you know, it’s just so rarely the problem.   

  

The problem really centers around the gut, which can be really affecting, particularly in our young adolescent populations. So that’s, you know, a major concern. And then also it’s a concern around brain fog and issues with ability to be able to think, and to be able to work ,and educate and complete tasks,  

  

Megan Gilmour  56:30  

Executive functioning,  

  

Marie-Claire Seeley  56:31  

Yes, and in fact, a lot of people, particularly the adolescent females, tend to end up with a diagnosis of ADHD, and that’s because ADHD in females is considered to present differently, without hyperactivity, but with this lack of executive function and daydreaming and so on. And you know, then there are people with real ADHD, and I don’t want to belittle their diagnosis, but we also need to make sure that the cause of their ADHD isn’t actually issues with blood flow to the brain being caused by POTS.   

  

Megan Gilmour  57:09  

That is a really important point there, especially again, with what’s going on in our school systems to do with attendance and non-attendance, and the relationship of that to spectrum disorders. So yes, I think that this is…  

  

Marie-Claire Seeley  57:32  

Yes, and just to complicate things, what we know about people with autism spectrum disorder is that they generally have poor autonomic nervous system functions. So, this condition is, you know, we have a lot of neurodiversity in our population, just by nature of, and we still don’t understand that clearly either, except for it’s likely the same kind of underlying cause, and people with autistic disorders may have neuronal differences that cause both autonomic nervous system disorder and their autism spectrum.   

  

So, you know our biggest concern is around the gastric problems, and particularly in the young populations where they may be misdiagnosed and mismanaged and they can become life threatening, you know, that is the end result of people having poor oral intake and difficulty with gastric motility, which some of these people have.   

  

And we know a lot about the gut and how to fix things, but not the movement of the gut. So when people have movement issues of their gut, you know it’s all supportive kind of therapy at the moment, and if the child or the adolescent also has a lot of complications in terms of medical trauma, anxiety and depression overlay from their illness, which they’re more likely than not to have, it makes it very hard to manage that condition, and particularly in a hospital setting where it just becomes more traumatising.   

  

So, our biggest concern is there’s almost no support for people with POTS. There is no clinical pathway instituted in the government. There’s no specialised clinics that are government funded. There is no resource funding from the government to provide to clinicians or to the patients themselves. There is no funding for research for POTS in Australia ever from our government. So, you know, at the moment, we’ve got a big black hole in how to manage and help these patients, and that puts them at high risk.  

  

Megan Gilmour  59:43  

Yes, and I hear what you’re saying there, yes, this is not a sustainable,  

  

Marie-Claire Seeley  59:46  

Yes  

  

Megan Gilmour  59:46  

And this is not, this is not sustainable.   

  

Marie-Claire Seeley  59:49  

No,  

  

Megan Gilmour  59:49  

This is not sustainable. It’s unsustainable. And I want to add to everything you said yet, because I believe your organisation and your work is going to make a difference. I really do.  

  

Marie-Claire Seeley  59:54  

We hope so.   

  

Megan Gilmour  1:00:07  

Yes, and it takes lived experience to drive that purpose, because it’s hard,   

  

Marie-Claire Seeley  1:00:17  

Yes, that’s right  

  

Megan Gilmour  1:00:18  

It’s hard, it’s hard work. And without you know that that drive the understanding of it and the ability to not tolerate that, that’s where the persistence comes from. And thank goodness there’s people like you, and you know that I have my son’s beautiful physician was the trigger of MissingSchool the organisation, because at a very difficult time in Darcy’s clinical picture, he just wasn’t getting better. He’d had the bone marrow transplant. He was in a very, very bad situation.   

  

And at one of our meetings, his professor said, and what about school? And I had been trying so hard for so long to keep that connection, and it was just so difficult that at this particular time, when everything was getting worse, not better, I really just let it slip, you know, and it was that question that triggered me.   

  

So, I relate to your story about your challenge that came from the doctor in Adelaide who you’re working with. It’s, yes, these are really important, pivotal moments in our life. So, I just once again, thank you,   

  

You’ve shared your family experience, so this next question will be an interesting one for our audience. How are siblings and peers of kids with POTS impacted, and what should families be across?  

  

Marie-Claire Seeley  1:02:11  

Yes, that’s a great question, and I guess it lays very much in the severity of the POTS presentation, in the child. But we, as I alluded to before, you know, we collected a lot of economic information around POTS, and so we found 58% of people with POTS are forced to quit their own job, and 56% actually have to borrow money from financial institutions to cover the cost of their living.   

  

And so, what we see anecdotally, too, is a lot of parents have to step back from work, and depending on how unwell they can be, and these kids can be extremely unwell. So, I’m talking about children that you know rarely even leave their bedroom and when they do leave their bedroom, they are at risk of fainting. There’s a lot of adjustment for a family that goes around that.   

  

And what it does is impact on the family’s social ability, you know, engagement as well. So often, siblings may miss out on things like sport and engagement, being able to go to certain events because the parents aren’t available to take them because of the sick child, and then also, they’ve lost their sibling, you know, they’ve lost the person that could play with them, run around with them, do all the things that can do with them.   

  

And it’s very hard, particularly for younger children, I think, to understand what’s wrong with that person laying in the bed who used to be active and vital, and, you know, they haven’t broken their legs, so why are they laying there?   

  

Megan Gilmour  1:03:51  

Of course, the parent, the parental attention that’s going to that young person at that moment and how that feels for siblings as well, and it’s unavoidable that the person requires a lot of care.   

  

Marie-Claire Seeley  1:04:07  

Yes, that’s right, and loss of income of a parent obviously impacts on the family’s ability to do other things that other families would do. So, you know, there’s a whole diverse range of issues.  

  

Megan Gilmour  1:04:20  

And do you find that it’s mainly mothers who are doing the caring in that situation?  

  

Marie-Claire Seeley  1:04:24  

Yes, look, we haven’t actually collected data on it, but you know anecdotally it’s almost always the mother.  

  

Megan Gilmour  1:04:30  

Yes, our data shows that it’s 90% of people who come to us for support with school, and it’s because they’re doing the caring on the medical condition as well. It’s not to say that you know, a father or other people in the family involved in care don’t care, but that’s what we see. It’s the mother primarily,  

  

Marie-Claire Seeley  1:04:54  

Yes, and I think legitimately, still probably in our society, you know, and this is definitely changing, but you know, it’s more commonly been the case that the person earning the most is often the male, and therefore that’s the job that is less likely to go first.   

  

And women are commonly in caring roles in terms of in occupations such as teaching, nursing and so on, where they perhaps have slightly more flexibility in order to, you know, cut down to look after a loved one. So, without a doubt, that’s what we’re seeing. We haven’t collected the data typically.   

  

Actually, the Scientific Chair of the Australian POTS Foundation, and a nurse researcher herself Dr Celine Gallagher, has spoken publicly and in podcasts about her own family situation where her one of her family members’ children got POTS.   

  

And you know that meant her having to step back for a little while from her own work for the family to adjust and manage that so she, she’s been really beneficial, I think, in talking to other families and that process and what it means and so on. And I know, you know, that’s just another layer for the patient as well.   

  

Megan Gilmour  1:06:19  

Another layer. These are important layers, aren’t they? Because suffice to say that in different ways, perhaps everybody’s under increased pressure and their own wellbeing, their own physical health and their own mental wellbeing is affected.  

  

Marie-Claire Seeley  1:06:44  

Yes, definitely. And I think women inherently have more of a sense of that caring role, and are more likely to put children, I think, first, and certainly often do in terms of their own wellbeing. You know, it’s, it’s a natural instinct for a mother to be protective of a child and that’s why it’s a mother often fighting the system, engaging the research, taking on the stress of everything that goes with the caring system. So, there’s a lot of impacts on the family overall.  

  

Megan Gilmour  1:07:19  

Absolutely, and as we said, in a cost-of-living crisis right now, where this, you know, these effects take place in a context, and that context right now is people are already stretched. Now, somebody’s leaving their job, or somebody’s job is disrupted enough to perhaps make them even lose it or have to step away from it because they can’t take any more leave.   

  

So, there’s, it’s just, for everyone listening, that the family is under an enormous amount of pressure for all sorts of reasons.   

  

So, what’s the current population of school age children. Do you think with POTS, and how accurate is the data on that? If there is, is the data tracked for example?  

  

Marie-Claire Seeley  1:08:14  

No, and so everything we’ve said before remains the same. There is no tracking in Australia of any data.   

  

We have the Australian POTS registry, which is a registry that we set up in our own clinic, but that’s not nationalised, and only tracks 16-year-olds and above, and that is primarily because we’re not a pediatric practice, and it’s also very difficult to, you know, get ethical coverage for a pediatric registry. But it would be our hope that in the future, we have been applying for grants in the hope that we can have a national registry to really get some information about this.   

  

There was a large study done in China to look at this. You know, how many adolescents in general, would you find with POTS if you went and tested a whole bunch of adolescents at school, and they did exactly that was a relatively bigger study. It was over 600 students, and they found in China that 6% had POTS by classification, and that means that they had both the heart rate symptoms that are diagnostic of POTS, but also the symptoms of POTS, which is when they stand, they get dizzy and get a whole lot of other symptoms.   

  

So, between that and what we know about long COVID, we do think this is a pretty common condition. Now, one caveat there to be really careful of is that heat growing in adolescents. So when adolescents have a sharp growth spurt, they will develop symptoms of dizziness and what we call orthostatic intolerance, and that’s a transitory condition, and it’s because their body literally has stretched and grown and their blood volume has not caught up that so it is not uncommon for – particularly if you think about the long, lanky, gangly boys who just grow a foot overnight, they’re likely to get quite fatigued, get a bit dizzy when they stand up, because their body just hasn’t been able to keep up with their blood volume and their muscle mass to match a sudden growth spurt.   

  

And so, we’ve got to be careful not to go diagnosing what is a normal transitory condition in a growing adolescent. But that is quite different. I mean, if those kids are unable to attend school, can’t have social engagements, have chronic migraine and headache and those symptoms, they’ve clearly not just got a growth spurt, you know? We don’t want to look and say, oh, you know, they’re so dysfunctional, but it’s just a growth spurt – they’ll get over it. We need to really weigh up this, what is a normal situation and normal functioning, then what is adversely affecting us an adolescent to the state that they can’t go to school?  

  

Megan Gilmour  1:11:14  

You mentioned 3% of the population, was it?  

  

Marie-Claire Seeley  1:11:19  

3.5% of people who get a COVID infection develop POTS. Now, in Australia, over 80% of our population has had COVID…  

  

Megan Gilmour  1:11:32  

Now there’s 4 million students, school students in Australia. So whatever percentage of the population that you have, you can multiply it by that to get an estimate. It’s not perfect, but –  

  

Marie-Claire Seeley  1:11:47  

Yes, that’s right, it’s a lot. It’s more than one, and it’s more than we can cope with. And given that many  

  

Megan Gilmour  1:11:54  

We’ve talking about hundreds of thousands  

  

Marie-Claire Seeley  1:11:55  

Hundreds of thourands, yes.   

  

Megan Gilmour  1:11:58  

Yes, and also, you’ve mentioned a few times there chronic migraines, gut, nausea. So, these are also some of the symptoms that we hear about where there’s not a diagnosis, but this is what children are reporting and comes up a lot in the conversation around what is labeled.  

  

And I say labeled because it’s a coding an absence, coding circumstance that gives rise to that label is where you don’t have a medical diagnosis, so you don’t have a medically approved absence.   

  

So, and I don’t want to, from a data perspective, start pushing things together that shouldn’t go together but, and you’ve mentioned that as well, but this chronic migraines and gut issues, you know, is a thing that comes up and is associated with children who are expressing deep anxiety about attending school, you know that can also be caused by anxiety, but we also know that there’s a large proportion of students who are being labeled for their absences in this way, who are on the spectrum as well.   

  

And then we’ve had COVID and long COVID, that label. So, I just want to put that out there and leave it there, because there’s nothing conclusive there, but it is really interesting to talk about this.  

  

Marie-Claire Seeley  1:13:35  

And I think one helpful thing to kind of just relate back to that is, what are the symptoms of POTS, apart from a racing heart? And we do have clear classification of them, so we have surveys that are specifically developed to identify autonomic nervous system symptoms.   

  

And classically, if you have autonomic nervous system dysfunction, you’ll have multiple domains that are affected. One is what we call orthostatic intolerance, and signs of orthostatic intolerance are headache, because if you’re having difficulty standing up, it’s because your blood pressure doesn’t put enough blood back to your head, so that causes migraine, chronic headaches, headaches that are more that are worse with posture. So, over the course of a day at school, the headache gets worse and worse, and it’s really just recumbent, so laying down that resolves that.  

  

And then we have the gastrointestinal side, and the signs of that are bloating, fullness, what we call early satiety, meaning they have very little to eat, and they just feel absolutely full and nausea, you know, so that they’re very clear symptoms in the gut.   

  

Bladder: People with autonomic dysfunction generally have one or other, and that is either they can, basically they’re a camel, they can hang on to their bladder for all day long and never seem to need to go, and their bladder gets very full, and they don’t seem to have the normal kind of urge to go. And then you have people that have to go 20 times a day, so bladder urgency is the other one.   

  

And then the other clear ones are problems with sweating, so hyper sweating and thermo regulation disorder, so people having difficulty maintaining their temperature. They’re either cold when people are hot, hot when people are cold, cold peripheries.   

  

And there is another one that a lot of people don’t really talk about, but it is quite a strong feature when you go looking for it in research, and that’s what we call pupillary motor function. So, your autonomic nervous system controls your pupils, and in fact, testing pupil responses is one of the easiest ways to pick up this condition.   

  

Now, the signs of that to most people, and particularly adolescents who wouldn’t know any better, would be that they’re photophobic, so they struggle with lights. They might get migraines from lights, and they have difficulty focusing their eyes, even though they’ve got good eyesight when they get it tested. But if the light changes, particularly, you know, as it gets lower, they have difficulty focusing their eyes, and their eyesight can change with focusing.   

  

So they’re all symptoms that we look for, and if we see a large cluster of those together, you know, we’ve got to be pretty suspicious that this person, you know, it’s not all school refusal and all anxiety, and particularly if we can objectively measure some of these things, like your pupil responses, it gives us a good indication of whether they’ve got autonomic nervous system dysfunction  

  

Megan Gilmour  1:16:42  

Yes. And I guess those diagnostic criteria would be great for all GPs to have.   

  

Marie-Claire Seeley  1:16:50  

Yes, and they are available on our website, actually, which can be a little hard to navigate at the moment, we’re getting it upgraded. But we do have one of the surveys which has been validated in a population, very easy 12-point survey for someone to – and it would be great for school nurses who are listening to this, just do that survey, see what symptoms are coming out.   

  

There’s a cut off score that suggests if someone’s got POTS, and the other one is the actual standing test that we undertake and how that is done.   

  

And a GP or a nurse in a GPs clinic can undertake that too. Parents can also do a version at home, just to check and see, and if they’re concerned about it, take the child to a GP with those results  

  

Megan Gilmour  1:17:35  

That’s excellent advice, and such a great – it’s more than a resource. Sounds like a must have in our times that we’re living in.   

  

Do kids with POTS currently miss a lot of school? And why?  

  

Marie-Claire Seeley  1:17:51  

Yes, yes, they do, and we haven’t been able to capture this because of our limited resources and zero funding. If we had more funding, this is probably one of our areas that we would really focus on because of its effect over a lifetime for these kids.   

  

But in our clinic, by the time people come to see us in our clinic, they’re probably the worst end of POTS. And so again, without good data, we don’t know, are we just seeing the worst of these kids, and that’s possibly the case. It’s possible there’s a lot of people with POTS who manage school, are fatigued, but, you know, they get there.   

  

But certainly, in our clinic, the kids we see, we see large amounts who don’t return to school and are doing open access type school at home, which is a great substitute for some of these kids, that keeps them somewhat engaged in school. But of course, they miss all that social engagement.   

  

But then we have another group of them who couldn’t possibly even do that. They are so disabled by their POTS, they could not even sit up and engage with the computer, their brain fog, their migraine, their fatigue, would be worsened by that to the extent that it just wouldn’t work for them.   

  

So, and then we see, you know, a bunch of people that make it to school, but they would have, you know, more than 50% absenteeism, a lot of shorter days, because they just can’t last a day at school, and schools are not great at adaption for this condition.   

  

It’s easier for a school to make policy adaptions when they see things like a wheelchair – okay, that kid needs a ramp. But these kids often need the ability to be able to take a break and lay down in a cool room. They need access to cold water all the time. They need access to their medications all the time, which is not well accommodated in school. So, there’s a lot of barriers for these kids to really engage in the school process.  

  

Megan Gilmour  1:20:03  

Yes, and you know, we just drop in here that every student with POTS would need an Individual Learning Plan as well. And often those aren’t put in place, basically to trigger the Disability Standards for Education, which definitely cover children with POTS. There’s no doubt about it, given the definitions in the standards and the standards also indicate to schools what the expectation is.   

  

It’s a national regulation that applies to every school in Australia regardless of school sector, regardless of the student’s age, regardless of what state or territory the school is in the very powerful regulation that sits under the Disability Discrimination Act.   

  

And it’s a regulation owned by the Commonwealth, and it is there to enable access to the classroom, access to the curriculum, learning alongside peers, equality of opportunity, additional supports which the school – once it starts creating these adjustments, and we won’t go into what adjustments they might be although Marie-Claire you might be able to suggest some – but schools can also get additional funding through Commonwealth levies, disability levies, and perhaps their own school systems as well.   

  

So Individual Learning Plans with adjustments is the way to trigger better support, because I get that people can learn from home, on their own and teach themselves, but kind of not ideal.   

  

We also advocate, and are very strongly advocating, because we have loads of data on this over years and years, pre-COVID as well – we probably have the largest data set in the world on using two-way digital connection when a student can or is able to engage, even if they may not be able to physically attend.   

  

So, we’re really working hard to get this kind of thing adopted in every school. And we hear from a lot of teachers that it’s really easy as well. The teacher can teach once and students just joining through a digital connection. So that’s a plug for, you know, the regulation and the expectation on our systems, the people who might not be aware of that.  

  

Marie-Claire Seeley  1:22:54  

Yes, that’s really helpful, and it’s somewhere where we want to create a lot more resources in the future for our community. What kind of adjustments are appropriate, and how to develop those plans in combination with the school.  

  

Megan Gilmour  1:23:08  

Yes, indeed, and we would love to work with you on that as well – with any of it that we know and that we’re aware of.   

  

Is there any particular moment in a young person’s life where you know POTS in the school life would present as particularly important? Sometimes I think of things like rites of passage. Academics are important, but social connection’s important, but also being part of a community and being recognised, as we talked about earlier, is not having your only identity as your illness. Is there anything you’d like to share on this point about times in a kid’s life?  

  

Marie-Claire Seeley  1:24:03  

Yes, I think from POTS, one of the major things that we see is – so the most common age and onset of POTS, now, actually, more people develop POTS as adults than as children, but in terms of the most common age, so you know, when we ask 1000 people, the most common number that comes up is 13 years old in terms of onset.   

  

And of course, what happens in a 13-year-old girl’s life at that time exactly, is puberty. And one of the problems with POTS is that we know that it fluctuates in severity with the menstrual cycle, and we haven’t found out the underlying kind of basis or pathophysiology of that. We just know that that is the case, and we know that female hormones actually are kind of protective against a lot of cardiac issues, but also autonomic nervous system issues and the fluctuation in the hormones throughout the menstrual cycle are likely to be what’s driving these fluctuations in in pot symptoms.   

  

And of course that has a lot of implications for those girls that are experiencing that, you know, the kind of one thing that that is as sure as anything for any girl is that they’re going to end up menstruating, and now they’ve got something that’s happening, you know, primarily once a month, that’s causing great distress to them, and that what should be a natural process becomes, you know, a very difficult thing for them that needs to be controlled and managed in a different way.   

  

So that affects that whole rite of passage in terms of a physiological sense for females. And I think the other one really lies around the kind of end of school. We see a lot of onset of POTS in the kind of year 11 – 12, population, primarily, just anecdotally, it seems to be around like things like glandular fever, infections, people getting chronic fatigue afterwards, and of course, there’s a lot of stress at that age.   

  

So, does stress cause POTS? No, but does stress predispose you to more illness? Yes, we know that the higher the stress, emotional stress, in a body, the more likely somebody will develop an illness. And that’s not just POTS that can be cancer and all sorts of things and but developing POTS at such a crucial time in your life, in terms of not only ATAR but all the rights of passage that surround those final years at school, you know, attending formals and all the celebrations –   

Megan Gilmour  1:26:54  

Driving lessons,   

  

Marie-Claire Seeley  1:26:55  

Driving lessons, yes, exactly, yes. So, you know, for a lot of these people, that’s all delayed, and they’re in their 20s, mid 20s, before they’re kind of back at a stage where they might be able to start to do those things, and it’s a massive delay for them in terms of social –   

  

Megan Gilmour  1:27:10  

Loss of social, your social place in the world  

  

Marie-Claire Seeley  1:27:17  

Yes, and independence. You know, that’s that prime time when adolescents are separating from their parents. They’re getting their license. They’re able to make more adult decisions. They can make decisions about their future. And these kids that develop POTS are actually at that very crucial time, are thrown in to complete and utter dependence on the people that really, they should be separating from   

  

Megan Gilmour  1:27:43  

Yes, yes,   

  

Marie-Claire Seeley  1:27:44  

and the loss of the peers at the same time.   

  

Megan Gilmour  1:27:46  

Yes, it’s a tough gig, and when you were talking about girls in particular, at that critical developmental stage of menstruating, it also reminded me of things you’d said earlier, which is, if the monthly cycle is also causing monthly triggers or crashes with POTS, then that would also be linking in people’s minds to your symptoms have to do with bleeding, you know, all that. You know, it’s your period. So, of course, you’re moody, and of course, there’s all these other things going on. So, so we have a, I guess I’m saying this reaffirming situation.  

  

Marie-Claire Seeley  1:28:38  

A confirmation bias, yes, that’s right, yes. And it sets in play, you know, conditioning to a negativity around what should be a pretty natural process for girls. What we also know from research is that there’s a higher percentage of women with POTS who have endometriosis, so at least 20% with clinically diagnosed endometriosis in POTS, which is more than double what is in the normal population.   

  

And we all know how hard endometriosis is to diagnose or to get a diagnosis for. So, it’s vastly unreported, particularly in young women who necessarily have not had ultrasounds and so on. So, we do think that there is possibly a connection physiologically between those disorders, endometriosis and POTS and so, you know, these girls not only have the POTS symptoms going berserk around their period time, but they often have extended bleeding and terrible,   

  

Megan Gilmour  1:28:42  

Yes, terrible  

  

Marie-Claire Seeley  1:29:42  

Yes, terribly painful periods and whole, you know, a whole week of school can be missed, if they are attending school, every month due to these symptoms.  

  

Megan Gilmour  1:29:52  

It is indeed complex in terms of school life challenges. This is, this is really our last section here. So, I think this one you’ve just answered like, what are the biggest challenges and vulnerabilities facing kids with POTS at school? You talked about not being able to – or not necessarily being able to have their medications, but that being difficult and challenging and making sure they’re on time and things like that. You talked about menstruation, we talked about pain, we’ve talked about gut issues, we’ve talked about bowel and bladder issues, headaches, migraines, sweating, not sweating.  

  

Marie-Claire Seeley  1:30:39  

Yes and, you know, fundamentally, I think the thing to always remember is that children are in vulnerable situations in a school, you know, they’re completely dependent on, you know, the niceness of the teacher that’s in front of them in terms of accommodating, you know, changes in their health.   

  

And most adolescents don’t want to stand up in the middle of a class or draw attention to themselves to say, I’m feeling unwell, you know, I need to go lay down. And when they do do that, you know, they often report back that it’s misunderstood, as we talked before it can be misconstrued.   

  

So they face a lot of challenges, and this is why really good, agreed upon plans need to be put in place that take the burden away from the child that they don’t have to, you know, stand up and have a really strong sense of agency, but also, you know, demand their rights, but that there are ways and means in which this can subtly occur to ensure that children have the space that they need to be able to recover from, you know, for instance, having POTS, kind of where, where they might be struggling to even maintain their consciousness, there needs to be a plan in which they know how they can manage that without having to put themselves in a vulnerable position.   

  

Megan Gilmour  1:32:07  

Yes, and that they’re not punished for it  

  

Marie-Claire Seeley  1:32:10  

Yes  

  

Megan Gilmour  1:32:11  

Yes, disbelief is one thing, I guess, and then the active form of that can be punishment for disbelief. So, what’s happening now to address these challenges and vulnerabilities in schools, and is it enough?  

  

Marie-Claire Seeley  1:32:32  

Well, to answer the second part of that question. First, no, it’s not enough at all. One of our deep, deep desires is to be able to get enough funding that we can develop the resources that are needed for schools.   

  

We had a great engagement with, actually, the West Australian School Nursing Association, who reached out to us, if you meet a nurse that knows about POTS, it’s almost certainly going to be a school nurse. They know the condition; they see the condition. Now, do they know how it’s caused and so on, probably not, and do sometimes they think that it’s, you know, a psychological issue, probably because they sometimes get that feedback.   

  

But mostly I think school nurses see this kid, they know this kid, the kid that can’t stand the heat, that that is struggling with migraines and gut function and so on. And so, we did a, you know, we’re able to contribute to some education, a small amount at a conference with the Nursing Association.   

  

The difficulty is, our government no longer really provides school nurses in the government schools, and so there’s very limited access to actually the biggest proportion of our population in schools. So that’s one big problem, and that means that we need to invest in resources as the POTS Foundation that we can develop that are appropriate, so that we can get out to schools to help them.   

  

You know, because just some simple education around what POTS is and how, what kind of accommodations might be needed, and some examples of that will really make a big difference, but it all takes time, money and expertise, and unfortunately, as yet, we haven’t been able to secure that funding, but we’re hopeful that that will occur in the coming years, and we’ll be able to provide those resources.  

  

Megan Gilmour  1:34:26  

Yes, absolutely. And I mean, part of what we’re working on with our National Insights for Education Directory is your organisation’s profile on that directory and this data that we’re putting together and examples of adjustments and what we know about what schools are required to do – because the Disability Standards for Education, I guess, doesn’t enforce, that’s the wrong word, but it is a requirement, let’s put it that way. That in combination, as well as that directory pointing to your organisation, for both teachers and families, that the data that we can put there, even through sharing this and pointing people to you, is a start on that as well.  

  

Marie-Claire Seeley  1:35:24  

Yes, yes, yes, that’s right. And, you know, these things do spread by word of mouth and everywhere,   

  

Megan Gilmour  1:35:26  

We’re in it together,   

  

Marie-Claire Seeley  1:35:26  

Yes, that’s right. And so, I’m hopeful that things will change now that we have actually a patient organisation that’s really, you know, flying the flag for people with POTS, which, you know, let’s face it, Australia had nothing up until three years ago. So, yes, the landscape will change. It’s just going to take a lot of energy and a bit of time.  

  

Megan Gilmour  1:35:57  

Yes, and I think from MissingSchool’s point of view, because, you know, apart from, from the conditioned illness itself, the next most important thing is, what about school?   

  

Marie-Claire Seeley  1:36:10  

Yes,   

  

Megan Gilmour  1:36:10  

And so, and families and parents do worry about that, and children are anxious about it themselves. Siblings and also peers in the classroom feel anxious about this too. And just to be able to bring some kind of bigger data picture across conditions where there are so many aspects of the school life situation that are the same.   

  

And we talked there about adolescents in particular, and sometimes parents or families not necessarily wanting to disclose a diagnosis. And we just hope that we can get to a position where there’s no need to tell a teacher, it’s POTS, but to say, this is the picture, this is what occurs. And this is the plan, and these are the adjustments, and when this occurs, that happens, and so on. So, there’s some kind of common framework for action, without an action on the education front, knowing that this is the context, but without even a focus on that disease.  

  

Marie-Claire Seeley  1:37:35  

Yes, that’s right. You know, much as we have in standard infection control now, you know, we set the standards so that they could address any communicable disease without us knowing what that communicable disease was, and we need to do the same for schools.  

  

Megan Gilmour  1:37:48  

Yes. I mean, it’s because, I think the other thing that families go through as well is – and mothers in particular, as we said, – having this complexity of knowledge, not only about their child, but the condition, because they’ve had to go and research it and manage it and everything, and trying to then bring that to the teacher, because health and education don’t talk either. They might have a letter from the doctor, but that doesn’t help a teacher who has no medical background.   

  

And so this sort of overwhelm for teachers could perhaps be avoided if we were able to drop the name of the diagnosis and focus on the kinds of presentations of it also for that young person, because, as you’ve pointed out, it can present very differently and differently for the same person at different stages of their school life, or, you know, their adolescence.   

  

So, you know, it’s more guideposts and then action. What do we do about the education to make sure that that part of the person’s life and their social connections can continue.   

  

So, this is the last question, bar one, tiny little one, which is, have we missed anything? And is there anything else we should be asking about school quality of life in the circumstances of POTS?  

  

Marie-Claire Seeley  1:39:27  

I don’t think we’ve missed much; you know, we’ve talked around the condition. There’s lots to know about the condition. I think POTS presents much the same as many other chronic illness conditions, invisible conditions for kids, and I think the impacts are similar across the disease states.   

  

I just think this is something that we really need to work on, making schools more aware of, you know, that we can have invisible illnesses that that can affect the whole body, like this, that have profound impact. So really, I think we’ve covered that really well and particularly thinking about the societal impacts in terms of economics and social impacts on kids at this really important age.   

  

Megan Gilmour  1:40:21  

And you’ve been so generous with your knowledge and your own lived experience and your own children and your work. So, it’s just been such a rich discussion, and I have personally learned so much from what you’ve shared. So, I thank you for that, and I know people will be just as grateful. So, Marie-Claire, what’s your call to action for POTS in seven words or less?   

  

Marie-Claire Seeley  1:40:51  

Probably should have put a bit more effort into this.  

  

Megan Gilmour  1:40:54  

We won’t hold you to the just seven!   

  

Marie-Claire Seeley  1:40:57  

Really the one target at the moment is to recognise POTS and to take it out of the psychosomatic domain. So, our real call to action, both within the clinical setting, the health setting, in terms of policy decisions, and in the education and public sector, is that we need to recognise this condition, and we need to stop blaming it on psychological factors.   

  

It’s an organic condition with organic features, which means that, you know, it is real, it’s not made up in their head. And once we recognise that in those sectors, we will reduce this terrible diagnostic delay and reduce the impact of the condition in terms of, you know, the societal and socio-economic effect, and stop the medical trauma.   

  

Megan Gilmour  1:41:52  

I think that’s so powerful. So, recognise POTS and take it out of the psychosomatic domain. That is such a good bookend for everything that you’ve said, and of course, is the call to action, to the clinical validity and all of those other things that have to occur, if it’s not just brushed off as someone being a bit anxious or, and that she is being a bit anxious, because we heard that there’s definitely a gendered clinical aspect to POTS, but there’s also a gendered social aspect to POTS as well, and that that really has to change.   

  

Shout out to the Australian POTS Foundation. You can find them at POTS foundation.org.au [https://www.potsfoundation.org.au]. Please go there. Give generously and send so much gratitude to this organisation and to Marie-Claire for your work and for your persistence and know that you’re making a huge difference to so many lives here in Australia, but I know that what you garner from your work here is going to also address an international conversation on this as well.   

  

So, thank you for joining me today. Marie-Claire.   

  

Marie-Claire Seeley  1:43:31  

Thank you, Megan. And I just want to say thank you to your organisation. This is an area that concerns us greatly, school absenteeism and missing school, and it was actually a relief to know that there’s already, you know, a group that is looking at that and how to help organisations like ours and to collaborate. And so, we’re really thankful for the work you’re doing and for reaching out to us  

  

Megan Gilmour  1:43:59  

Yes, it’s our absolute pleasure. We’re so glad that our theory of change is holding true on this and that organisations are now agreeing to this discussion, having it recorded, having it put out there. And I just know that together, we are going to make a difference.   

  

Because the more people, the more organisations that that join in a unified voice to you know, not only the clinical aspects, the data collection across these diseases, but also the quality of school life as well, which is so important for wellbeing. 
  

Marie-Claire Seeley  1:44:45  

Absolutely  

  

Megan Gilmour  1:44:49  

Thanks everyone for tuning in. Help us turn up the volume so all kids are seen and heard. Follow along, like, share, comment, or leave us a review, because we love hearing from you, and if you want to donate, head to missingschool.org.au, because every dollar makes a difference. 

 

View the episode here.