Ep. 21: The Cut Footage from the TV Interview: Spotlight on EDS & POTS

In this deeply personal and vital episode, Nichi shares the behind-the-scenes truth that didn’t make it into the national TV segment which aired on A Current Affair recently about her daughter’s shocking heart attack from Spontaneous Coronary Artery Dissection (SCAD) just before her 18th birthday. While the TV piece highlighted SCAD beautifully, it omitted the invisible battles her daughter was already facing — Hypermobile Ehlers-Danlos Syndrome (hEDS) and Postural Orthostatic Tachycardia Syndrome (POTS).

Nichi walks us through what hEDS and POTS really are, how they can silently impact nearly every body system, and why it’s so important we shine a spotlight on these conditions. She shares emerging research, heartbreaking statistics from a 2025 global survey, and reflects on the toll of misdiagnosis, medical gaslighting, and the hidden pain millions face.

This episode is for the medically dismissed, the misunderstood, and those trying to find answers in a system that often overlooks them.

🎧 Listen to hear:

• The full story behind the ACA interview — and what was left out
• What hEDS and POTS really are, how they show up, and who they affect
• How these conditions may relate to SCAD
• Brand-new research findings from a 2025 global survey of over 9,000 people
• How the medical system continues to overlook these conditions — and what needs to change
• Tips for patients, parents, clinicians, and advocates
• Why raising awareness is more than a campaign — it’s a necessity for survival

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Previous Intro and Outro music: Inspirational Acoustic - Organic Harmony by Sonican; and Andrii Poradovskyi from Pixabay.  Current music: levgen Poltavskyi from Pixabay.  
Disclaimer: This content is general in nature and intended for educational purposes only.  It is not deemed as psychological treatment and does not replace the advice from your health professional or need for psychological treatment.  

Transcript

0:01

Welcome to Shine the Spotlight site convos on health, money, and Business. Here we talk openly about invisible health for psychology and complexities of money and the ups and downs of building businesses that actually support rather than drain us. I'm your host, Nikki Morin, clinical psychologist, consultant, and advocate for creating healthier, wealthier, and happier lives, being accessible to all. With decades of experience in rural business and entrepreneurship, this is a space for real talk and real change with small steps that can lead to big change. Whether you are navigating invisible health, wrestling with money habits, or grow in a business, or just curious about how psychology can shift the way you live, you belong here. Every episode you'll get a blend of raw, relatable stories, practical strategies, and psychological insights. So pull back the curtain. Let's give it a spotlight and help everyone build their relationship with health, happiness, and with money. Let's have the conversations that create real change and. Welcome back to Shine the Spotlight. Today's episode is not only deeply personal, but it's an area that I'm also I care very deeply about. About a fortnight ago, an interview aired on current affair where my daughter and myself were interviewed about the heart attack that she experienced earlier this year. The actual interview was about an hour long, but the clip that aired was roughly five minutes. So as you can imagine, what was covered in the whole interview was quite extensive compared to what was shown. The reporter did a lovely job of raising awareness of spontaneous coronary artery dissection, which I'll refer to as scad. So this is what my daughter experienced, the SCAD or the tear in the artery caused a clot, which then caused a heart attack and it was just before my daughter's 18th birthday. My daughter is reportedly the youngest known person in Australia to have a heart attack due to SC A D. And we've also recently just done an interview with the Victor Chang Research Institute, which will be out soon. So the current affair interview, the coverage raised awesome awareness about SCAD because it's one of those invisible conditions and there's not much known about, or it's often ignored, particularly in women. Heart symptoms are often ignored, but our hope was to also desperately raise awareness about her underlying invisible conditions. The interview showed her being asked if she was fine leading up to the attack. That was in the context of that night. So that night, yes, she was watching a movie in bed. There was nothing out in the ordinary. Everything seemed fine, there was no issues. She was calm, collected, and happy. But the couple of years before that were hard and we talked about that. And we talked about Hypermobile, Elliston loss syndrome, also known as Hypermobility spectrum disorder, and Postural Orthostatic Tachycardia syndrome. Known as pots and fatigue, particularly after a heart attack, the fatigue can be even more so prominent. So in this episode, I wanna share some of those never aired parts that were discussed in full in the interview. Dig into what EDS Ellis Delos and are and show how they might connect to scad, highlight new research and explain why the world needs to know about this. Not just for my daughter, but for the many people who suffer quietly and the people that I work with. So this is something that I'm super passionate about, putting them under the spotlight every single week in my clinical work and also in my personal life. I'm interacting with people, all their family who have these conditions. So living with EDS or hypermobility spectrum disorder and or having pots, often they go hand in hand. Is a bloody tough gig. These conditions are multi-systemic. This means that they impact multiple systems in the body and they're in the top few conditions that regularly get dismissed, misrecognized and misunderstood. So in this episode, I'm gonna put huge, gigantic spotlight for all those living with conditions. And before we step deeper into the science, I want to anchor us. So my daughter's heart attack from SCAD was random. We were told that pots would not contribute to this. However, there is current research undergoing that explores the link between this. For us, this is the tip of an iceberg. It was the unbelievable, how could this happen to a team? And she was told it was anxiety initially and dismissed. But underneath that iceberg, there's an notion that includes connective tissue disorder such as EDS. An autonomic dysfunction and to understand that we need to explore these things a bit further. So I'll explain to you what these conditions are, just in case you experienced anything similar or you know, someone who does. So EDS, elastin loss syndrome or hypermobile spectrum disorder. They're on a sliding scale. Hypermobility spectrum disorder is what I have that's on. The lower symptom end of the scale. And then once it starts getting more symptomology, sten loss is the more fitting diagnosis. However, there's several types of sten loss. Hypermobile. Sten loss is the most common type. So patients with EDS often exhibit joints that move beyond standard range. They can be double jointed. They might frequently have joint dislocations or subluxations. They might have soft or stretchy skin, or translucent skin, easy bruising. Sometimes wounds can delay healing. Increased risk for injury. They might need more gentle recovery after surgery. They can feel pain more, they metabolize medications differently and more risk to waking up when under general anesthetic, often there can be what looks like avoidant, restrictive food intake disorder or offered, there's digestive issues. There can be bladder or urinary retention or urinary frequency. Often there can be reproductive issues. For example, endometriosis. There can be pregnancy issues and headaches. So it is very multisystemic and because connective tissue is everywhere, and this is a connective tissue disorder, it's in our blood vessels, our skin, our organs, our muscles. So EDS can affect many systems. It's not just joints or skin. There's a challenge as there's no known definitive genetic test for hypermobile EDS. So the diagnosis tends to be clinical based on symptom criteria. And this means sometimes if you are with a doctor who is not well knowledgeable in this area, it can very likely get dismissed or misattributed because recent research found. That it's up to 22 years for people to get a diagnosis and help with EDS, which is way too long. Now, if we look at pots, so postural orthostatic tachycardia syndrome, this is a form of dysautonomia, which is dysfunction of the autonomic nervous system. When a person changes posture, for example, from lying down to standing. Their autonomic nervous system fails to regulate heart rate and blood pressure properly. So often there's a delay between the autonomic nervous system, telling the brain that you've gone from sitting to standing. So you might feel dizzy, everything might go black. You might feel lightheaded, have heart palpitations and on constant in your heart goes over more than 30 beats a minute or more than 40 for adolescents, but with the more than 40 for adolescents. That's not strictly clinical cutoff because you need to look at clinical symptoms and the whole picture. And often there's not a drop in blood pressure that defines classic orthostatic hypertension. So, as I said, lightheadedness, dizziness, heart palpitations, fatigue. So fatigue's a big part of it. Brain fog, exercise intolerance. Nausea, bloating, digestive issues, temperature regulation issues, he intolerance. So hot showers can result in dizziness or feeling faint after hot showers. You can also have like a purple or a ready spots on your feet and up your legs, and some people do faint. With both pots and EDS. They often co-occur together, so it often will overlap over 50% of the time with. A DHD, autism or Tourette syndrome, and these conditions can make a mainstream school extremely hard and often mainstream school does not cater for young people with outside the box needs or misunderstood or not very well recognized needs. I've seen it that many times when I see a school that does work in, it's like, hallelujah. There is education systems out there that actually do work with the child, but often I see the case where mainstream is just too hard and then young people will turn to alternative education because it's more of an individualized, tailored approach. Something else that often can overlap is mast cell activation syndrome. And they often will say that this is having the trifecta or you know, all three, so if we pause for a moment, your head might be spinning and you're not alone. These are complicated conditions. They intersect across multiple body symptoms and impact every level of functioning, and it's because of their complexity is why they're under-recognized. And I think. There's a lot of health professionals out there who have very limited knowledge, if any, knowledge of these conditions because sometimes complex health can feel like a big knotted ball of wool and they think, well, where do I start? Where, where is there an end to the wool where I can start making a difference? But the thing is. We need to choose that somewhere. As a health professional, we need to choose an end of the rule somewhere that we're going to start with. So many listeners will already know that SCAD or spontaneous coronary artery dissection is often called a rare but serious type of heart attack, especially in younger people without traditional risk factors, and with scad, they do say it's rare. It is the most common heart attack in women under 50, and particularly after pregnancy. But being so young in having it is something that is very rare. In our daughter's case, the TV interview focused on what SCAD was and the heart attack that it can cause, and it isn't widely understood how. Connective tissue disorders like EDS and autonomic stresses in POTS might increase risk or influence outcomes. So that's new research that's going on. Yes, sten loss is a risk factor, particularly if you have vascular type EDS, which does impact the heart. Uh, my daughter does not have that, but it is scary the number of people I talk to who present. For help. And often when they tell someone I have EDS or sla, they have no idea what that is. And it's more common than we actually realize. There was new research that was just published in the Journal of Clinical Medicine and it included a survey of over 9,200 people with questions exploring the symptoms, the diagnoses, the comorbidities, the healthcare utilization, the quality of life, and the diagnostic experiences of people with SLAs. And the key findings was that these people have a delay, as I mentioned earlier, of over 22 years between symptom onset and diagnosis and the average with hypermobility spectrum disorder 17 and a half years, which in my case is true. Many respondents reported diagnostic ambiguity, so that means some who self-identified as having it also met. Hypermobile EDS criteria and some with EDS did not underscoring the fuzziness of the diagnostic boundaries. The respondents of the survey with EDS also had an average of 24 comorbid diagnoses, so that's the number of other conditions that occur alongside it because it's multi-systemic, so it really does impact. Every functioning of someone's life, nearly all reported chronic pain. Almost 99% have chronic pain with EDS. So anyone that's going to tell you that EDS does not include pain, I've had that happen before. They're wrong. It does high rates of gastrointestinal disorders, over 84% and. Neurological structural issues are also common, such as small fiber neuropathy or Chiari mal mal formation, and the survey compared people's comorbidities or the other conditions they have, alongside it to a large general population and found elevated prevalence of neurological immune and autonomic diagnoses. So many people say that onset or worsening of symptoms is triggered from puberty or infection. So that's something I see very commonly in the people I work with, and it's often they're called connective tissue disorders. However, research argues that is this fitting because it's a more complex multi-system conditions rather than purely just connective tissue based. There's a lot of burden on living, and there needs to be more revised diagnostic frameworks, and it emphasizes the need for being able to understand further the underlying biology and using this to guide therapeutic development. So we need better recognition, clinician education and coordinated. Multidisciplinary care that are urgent priorities. I absolutely agree with that. But I also find trying to change the system or improve the system sometimes feels like I'm up against a huge big steel bullshit that there's no way of penetrating. So when I hear the stories of people who live with these conditions and the medical trauma they've experienced, the gaslighting, the number of. Dead end appointments with no help and the functional impact on people's quality of life, it makes me just want to tear up. It also makes that fight stronger and brighter in me to improve training, education, and awareness. And that was what we were wanting to do with our interview. That's why I felt the need to do this episode when that wasn't brought across in the interview. You might ask with all these uncertainties, why push so hard for awareness? Well, awareness is the first offense against the suffering, the, the dismissal, the misdiagnosis, and the tragedy. It's also, there's so much missed opportunity for prevention or mitigation. We need better support, planning, and patient empowerment. There needs to be more data collection and research. And shift in medical culture. So awareness is not about certainty. It's about opening doors so that suffering doesn't get hidden in silence. Some of the people that I know and the suffering that I hear and see in people with these conditions is absolutely heartbreaking. There has been times where I have felt so upset just thinking. And it makes me angry with the level of misunderstanding and misrecognition and I think that's part of the fight that I have to get this out there. For patients or loved ones, some tips. Keep detailed symptom logs of everything, everything that is relevant for you. Keep detailed symptom logs, right list of everything you notice. Ask your health professionals directly. Could this be POTS or SLOs syndrome or hypermobility spectrum disorder, even if they might be skeptical and seek multidisciplinary care. So some of the specialists that are often involved, depending on everyone's symptoms, there could be a rheumatologist, a physician, a cardiologist or neurologist, a geneticist, your gp. Of course there could be dieticians, psychologists, physiotherapist. All sorts of people Do your research and find the right health professionals that have knowledge in this area that's ultra important for not wasting time. Compression garments is supposed to be helpful for pots as well as high, but staying hydrated, so two or three liters of water a day, as well as increased salting intake, where medically appropriate and it's pacing, so knowing your limits avoid overexertion. Gradually build tolerance and find community. So patient advocacy groups can provide knowledge and emotional support. Be careful which ones. Some can be very quite negative and it can lead to feeling more flat or down. Incorporate screening for hypermobility or connective tissue disorders and dysautonomia in patients with unexplained fatigue. Fainting dizziness or multi-system complaints. That's a really important one for health professionals and listen to patients respect their symptom narratives and support research and encourage training and continuing medical education on these more rarer conditions or invisible conditions because they're definitely out there. So for advocates, the media and any listeners, share your stories widely. Encourage patients and families to contribute to surveys or research studies, promote awareness in schools, workplaces, health funds, because more needs to get out there. So my hope today is that listeners will understand the heart attack was not the whole story, that was the tip of the iceberg. The reporter did a beautiful job of highlighting scan, but we were also so, so keen to shed a light. On EDS and pots, and I felt disappointed that that was missed we were disappointed that they were left out. These are unseen struggles that need to get out there, and those invisible battles are worth telling. They're worth believing and worth investigating. So I invite you to share this episode. Reach out to your local health professional and discuss it and encourage loved ones. Suffering mystery symptoms to ask these questions. We've also, um, our article for the Victor Chain Institute, which will be out soon, it does include the underlying conditions, so I'm really excited that we are able to get awareness that way. So thank you for listening. It was a very deeply personal and passionate topic that I just had to share when that opportunity was, missed from the short segment that was actually shown of the interview. Very grateful though for the SCAD to be highlighted thanks and talk to you again soon. Thank you for joining me on this episode of Shine the Spotlight. I hope today's conversation has left you feeling inspired, empowered, or having a greater understanding. If this episode resonated with you, please subscribe, leave a review, and share it with someone who needs to hear it. Together we can shine the spotlight where it's needed most. Your support helps these important stories reach more people. And remember, this is your platform too. If you or so Nino has an inspiring story, a voice that needs to be heard, or a topic that deserves to be explored, I'd love to feature it on the podcast. Reach out, or you can find me on social media where details are in the show notes. Your story could be the spotlight that someone else needs to hear.