Invisible Health Network

05/10/2025

IN CASE YOU MISSED THIS: Fractures, hospital visits, and child removal - Kaylee's nightmare ended when her girl was finally diagnosed with Ehlers-Danlos Syndrome. Link in comments.

29/09/2025

📺 What the rest of the hour long interview on A Current Affair Didn’t Show…
My daughter suffered a heart attack from SCAD just before her 18th birthday — and the story aired last week on national TV. SCAD was beautifully highlighted but what didn’t air were the years of invisible illness behind it.

The conditions were hEDS and POTS — two complex, multisystemic conditions that affect thousands but are often misdiagnosed, dismissed, or completely overlooked.

💔 All of these conditions need the spotlight and awareness raised as they impact every aspect of functioning. And that’s why I’m speaking out.

🎙️ In the latest episode of my podcast Shine the Spotlight, I’m sharing:
• The full story behind the interview
• What hEDS and POTS actually are — and why they matter
• The research that proves we’re not imagining this
• Why women, teens, and people with invisible conditions deserve better
• What we all can do to make change happen

✨ This one’s for the dismissed. The misunderstood. The exhausted but brave. The “you look fine” crew. The zebra warriors and their families.

📣 Let’s raise the volume on invisible conditions. Because awareness isn’t just education — it’s prevention.
Link to the episode: https://www.buzzsprout.com/2244292/episodes/17922495

27/09/2025

🎗 Today is Childhood Brain Cancer Awareness Day 🎗

A day to raise awareness of the impact on children, families and carers and drive vital research to save young lives.

🧠 Brain cancer kills more Aussie kids than any other disease.
🧠 Children are 10x more likely to be diagnosed with brain cancer than any other cancer.
🧠 Around 120 children & adolescents are diagnosed each year—and an estimated 45 will die.
🧠 Children who survive brain cancer often face lasting challenges such as growth abnormalities, vision or hearing issues, learning difficulties, and emotional impacts like anxiety or depression.

The deadliest childhood brain cancer, DIPG (diffuse intrinsic pontine glioma), strikes around 20–25 Australian children every year. Fewer than 1 in 10 survive two years after diagnosis - and there is still no effective treatment or cure.

The only way to change these heartbreaking numbers is through research.

At the Charlie Teo Foundation, we’re funding bold, groundbreaking projects to give every child a fighting chance - but we can’t do it alone. Your support matters. Every dollar, every conversation, every share brings us closer to a cure. 💛

15/09/2025

Our interview with A Current Affair aired today to raise awareness of SCAD - Spontaneous Coronary Artery Dissection, which resulted with our daughter having a heart attack in April this year, just before her 18th birthday. That battle was the tough enough on it's own. But, before then dealing with hypermobile Ehlers-Danlos Syndrome and POTS adds a whole extra layer. A whole extra layer of stress, dismissal and misrecognition. All of these 'zebra' conditions are extremely hard to live with and there is still such a tremendous amount of education to be done in all health and education systems to improve this 🫏

15/09/2025

Our interview raising awareness airs on A Current Affair tonight, 7-7:30, channel nine 📺🦓💜

12/09/2025

Sometime it feels like I’m battling against a system that’s not designed for anything outside the box and that is complex. And, these are frequent presentations - hidden in plain sight. But, I remind myself that I’ve been iterating within a system that wasn’t designed to support complexity, chronicity, or connection.

I work, educate and advocate for people living with Ehlers-Danlos Syndrome (EDS), POTS, pelvic pain, chronic fatigue, gut issues, trauma, and neurodivergence.

And I’ve seen what the research now confirms:
• These people are among the most misdiagnosed, dismissed, and invalidated populations in healthcare.
• They experience not only diagnostic delay, but clinical distrust, invisible disability, and often trauma from the very systems meant to help them. New research shows 94% of EDS patients are dismissed or told it’s a psychological issue.

There’s a long way to go at improving health care.

I’ve built programs, delivered workshops, created clinical pathways, spoken publicly about these issues — and still, I hit the same barriers:

❌ Systems that separate mind from body
❌ Health models that don’t account for dysautonomia, central sensitization, whole person care or trauma
❌ Persistent medical misogyny that dismisses complexity as “anxiety”
❌ A lack of interdisciplinary frameworks for sustainable, person-centered care

This isn’t a lack of individual clinician compassion.
It’s a systems problem — and we need a systems response.

So why do I keep going?

For starters, I’ve lived it myself. I’m featuring on A Curent Affair next week to raise awareness about this very thing. And, because every week, I hear the same story from women and teens who:
• Are told their symptoms are “too hard to pin down”
• Are referred for mental health care instead of multidisciplinary treatment
• Are exhausted, not just physically, but emotionally from being disbelieved

And I believe we can do better.

That’s why I’ve developed clinical training like Beyond Anxiety that equip professionals to see what’s invisible, treat what’s complex, and honour what’s true.

Because complex doesn’t mean untreatable.
And chronic doesn’t mean hopeless.

If you’re working in healthcare, research, mental health, or policy — and you believe we need to stop pathologising what we don’t understand, and start listening, learning, and evolving…

Let’s connect.

Let’s build the future of care — one that sees the whole story, not just the presenting symptom.

10/09/2025

Today is a powerful reminder that behind every smile, every "I'm fine," and every silent moment — there might be someone carrying more than you know.

For many there is more going on behind the surface, and those with stress, worry, mental health, invisible conditions, fatigue, trauma, or chronic stress... being asked “Are you OK?” could be the lifeline that helps them feel seen, heard, and supported.

This R U OK? Day, we invite you to go beyond the surface:
✨ Ask with genuine care.
✨ Listen without judgment.
✨ Hold space without fixing.
✨ Check in again, and again.
You don’t need perfect words. Just presence.

💛 Today, and on any day — check in with your mates, your team, your family, your community. You never know who’s waiting for someone to notice.

09/09/2025

Experienced Spontaneous Coronary Artery Dissection? 🙋‍♀️Here's a simple way to get involved.

This study is investigating how autonomic-nervous-system changes may underlie “non-cardiac” symptoms such as migraine, dizziness and fatigue that often accompany along SCAD.
Who can take part?
• Adults 18+ with a clinician-confirmed SCAD diagnosis
• Able to read and respond in English
What’s involved?
• One ethics-approved online survey (≈ 10–20 min)
Your answers will clarify how nervous-system symptoms intersect with heart disease and, we hope, drive better care pathways for people whose concerns are too often dismissed.

This is a University of Adelaide study. Data stored securely on Australian servers and reported only in aggregate. Take the survey now at https://redcap.link/CALM-NOCA

05/09/2025

There is not a week that goes by that I don't hear stories of dismissal, misrecognition and feeling unheard. Too many women live in the waiting room of doubt, dismissal, and delayed diagnosis. We’re told it’s stress or anxiety. We’re told it’s normal. We’re told to settle for less care, less time, less belief in our stories.

But not anymore.
This Women’s Health Week, we’re not just asking for change — we’re building it.

💥 At Invisible Health Network, we’re saying YES to:

Trauma-informed, gender-responsive healthcare

Diagnostic curiosity, not dismissal

Interdisciplinary care that sees the whole person and clinical picture

Educating clinicians to do better — with empathy and evidence

Putting invisible conditions on the map

Your pain is not too complex.
Your story is not too much.
You deserve care that listens, learns, and evolves.

🔊 Say YES to revolutionising healthcare for the better. For you. For all of us.
Let’s create a system that believes patients the first time.

05/09/2025

This professional development fills a huge gap in healthcare today. Closing the gap in chronic conditions often hidden in plain sight. Too often symptoms are dismissed, misrecognised or labelled as anxiety.

This evidence-based, clinical education workshop aims to close the critical gap in women's health care, focusing on conditions that often overlap with neurodevelopmental conditions, pain, fatigue, trauma, and disordered eating/gut issues, and are often dismissed or misunderstood. The training equips professionals with the knowledge, tools, and trauma-informed approaches needed to recognise, validate, and effectively respond to complex conditions that are too often overlooked or misdiagnosed, and is suitable for all health providers.

Conditions included:
Connective tissue disorders
Postural Orthostatic Tachycardia Syndrome (POTS)
Gut/eating issues
Pelvic health, such as Endometriosis

Training is delivered online on Wednesday 22nd October 2025
Time: 9:30am to 3:00pm AEST
Investment: $347 AUD

Nichi is a clinical psychologist, credentialed eating disorder clinician, board-approved supervisor, author and podcast host. Nichi has been featured on A Current Affair and Brainz Magazine. Nichi brings years of research, clinical experience and personal, lived experience with chronic, invisible health in women.

Learn more about this workshop here: https://www.invisiblehealthnetwork.com/sustainable-health-blueprint-copy-3

05/09/2025

Shared from another page 💜🦓
Are you an adult, 18 years old or older who have been diagnosed with Ehlers-Danlos syndrome?
Get involved in a global study, anyone in the world can participate, including us who reside in Australia.

This research is being conducted by

https://redcap.musc.edu/surveys/?s=RKTA4EYDCAFEYWNE

Get involved in this global study, open to adults 18 years old or older who have been diagnosed with Ehlers-Danlos syndrome, anyone in the world can participate, including those residing in Australia.

This research is being conducted by

Link in stories and highlights!

https://redcap.musc.edu/surveys/?s=RKTA4EYDCAFEYWNE