Invisible Health Network

12/08/2025

01/08/2025

https://newsroom.uvahealth.com/2025/07/31/heart-failure-drug-relieves-pots-symptoms-study-finds/?fbclid=IwQ0xDSwL6ItBleHRuA2FlbQIxMQABHkoemYaVukVS1NcUfcxix9uSwpcR_UEL42QRl2QzaZ7hQp-RJ43g-fi5caAk_aem_8BXmWci4rKOQLDnJDFh5BQ

An existing heart failure drug can provide relief for POTS (Postural Orthostatic Tachycardia Syndrome), a new study suggests.

21/07/2025

**Free Masterclass for Entrepreneurs, business owners and professionals with invisible conditions**
You didn’t leave your 9–5 to work 24/7. There is more outside of work and in life.
You didn’t start a business to burn yourself out or feel trapped.
You are likely brilliant, ambitious… and barely keeping up with the pace you think you “should” be running at.
The problem isn’t you.
What if you could work with your body rather than against it? Traditional business models are not designed to fit everyone, particularly if you are a business owner, entrepreneur or professional with invisible challenges.
I've been there and almost gave up my business. There’s another way to lead.
🎙️ Free Masterclass hosted by Nichi Morrin - clinical psychologist, business mentor, podcast host & author. Nichi has had over 20 years in business, qualifications in business, and lived experience with invisible conditions.
Work Smarter, Not Harder: Success Without Sacrifice for Entrepreneurs with Invisible Challenges
🗓️ Wednesday August 20 | Online | 90 Minutes | Replay Available
You’ll learn 3 Powerful Shifts to Build a Business That Supports You:
🔹 Regulation before Strategies
→ Learn why your nervous system must feel safe before you can take aligned action — and how to get there gently.
🔹 Lead From Identity, Not Expectation
→ Stop proving. Start creating from who you are — not what the world expects.
🔹 Build With Capacity, Not Fantasy
→ Honour your energy cycles, sensitivities, and truth — because sustainability is a strength, not a step back.
Plus, You’ll Discover:
Why traditional productivity hacks don’t work for your body
What the Launch Pull Back is about — and how to move through it without sabotaging your goals
A trauma-informed, nervous-system-first model of success for women with invisible conditions
A safe way to lead and grow without sacrificing your health
This isn’t about doing more. It’s about doing it differently — so your success doesn’t come at the cost of you.
🎟️ Save your seat now: https://www.invisiblehealthnetwork.com/the-invisible-ceo-1

18/07/2025

My new article just published in Brainz Magazine today! Showcases the work I have been doing in the invisible health space Invisible Health Network

Invisible health conditions affect millions of people worldwide, yet too often, the support system doesn’t align with their unique needs. From chronic pain to neurodivergence, these conditions affect...

18/07/2025

You’re not stuck because you’re unmotivated.
You’re stuck because your nervous system is protecting you from a version of success that once cost you too much.

And that’s not a flaw — that’s wisdom. That is data that you need a new way of working.

What you need isn’t a new planner, productivity hack, or push through the crash.

You need a new container — one that supports your body, brain, and brilliance.

Something is coming for people like us!!!
For entrepreneurs, business owners, and professionals with invisible challenges who want to build… but not burn out.
Stay close. I’ll tell you more soon. It is very exciting! 💛

04/07/2025

Sharing this from another page. Help needed for much needed resesrch 🦓

Do you have a suspected or confirmed diagnosis of HSD, hEDS, or EDS?
Researchers at the University of Adelaide are inviting individuals to participate in an important study. Your experiences could help improve understanding, diagnosis, and care for people living with these conditions in Australia.
Participants need to be:
· Over 18 years old, and
· Reside in Australia, and
· Have a suspected or confirmed diagnosis of Hypermobile Spectrum disorder (HSD), hypermobile Ehlers-Danlos Syndrome (hEDS) or Ehlers-Danlos Syndrome (EDS).
· Participation is via an online, anonymous, ethics-approved survey (H-2025-038).
To learn more or get involved, read the information below and follow the link to the Participant Information Sheet and the survey:
https://adelaideuniwide.qualtrics.com/.../SV_0v3hnndS2j3PWRg

You will be able to complete the survey in multiple sittings to help you feel comfortable and decrease your fatigue.
The survey automatically saves your progress and you can return at any time to your "spot" in the survey using the original link.

Yours sincerely and with much gratitude,

Hypermobility Research
University of Adelaide
hypermobility@adelaide.edu.au

28/06/2025

🔥 Breaking the Trauma Cycle - A must listen for anyone with invisible health, trauma or burnout 🔥

I had so much fun doing this podcast episode where I’m joined by the incredible Dr. Nat Green — trauma breakthrough coach, bestselling author, and creator of the Seven Archetypes of Transformation.

We go deep into what it really takes to heal after trauma — beyond just talking about it.

🎙 Inside this episode:
* Why trauma isn’t only in your head — it lives in your nervous system
* How vicarious trauma and burnout quietly erode our wellbeing, long before we even realise it
* The power of holistic healing approaches that reconnect your head, heart, and gut
* What it means to discover your trauma archetype
* How post-traumatic growth is possible, no matter how long you’ve struggled

If you’ve ever been dismissed, gaslit, or told you’ll “never get better,” this is your reminder: Healing is possible!

💛 This is a must-listen for anyone living with invisible conditions, trauma, burnout, working in the health professions, or searching for hope after life’s hardest chapters.

🎧 Available on all popular platforms or listen here: https://www.buzzsprout.com/2244292/episodes/17407237

27/06/2025

🔬 Neurocardiogenic Syncope is a common form of Dysautonomia. Syncope is a medical term for fainting. This can cause a temporary loss of consciousness due to a sudden decline in blood flow to the brain.

Can also include the following:
🔹 Sweating in the upper body
🔹 Immediate onset of nausea
🔹 Rapid drop in heart rate
🔹 Drop in blood pressure
🔹 Sudden loss of motor functions
🔹 Legs can give out
🔹 Sensation you may faint
🔹 Fainting
🔹 Convulsions
🔹 Non-epileptic seizures
🔹 Confused feelings after fainting
🔹 Exhaustion following fainting
🔹 Injuries caused by falls

Learn more now.
https://bit.ly/POTSandDysautonomia

24/06/2025

A significant advancement for healthcare professionals in understanding Hypermobile Ehlers-Danlos Syndrome (hEDS)!

This comprehensive new guide for GPs (authored by Dr M. J. Thomas & J. Linke and now publicly accessible by AusDoc) is a game-changer. It provides essential insights into diagnosing and managing hEDS—a condition that too often than not goes undiagnosed and misunderstood. As we are aware, hEDS is a multi-system disorder that impacts every part of the body, leading to joint instability, chronic pain, and more—but with the right care, patients can experience better quality of life.

For GPs, this guide is a critical resource to ensure accurate diagnosis, individualised treatment, and holistic care for patients with hEDS. It’s an important step toward reducing delays and providing appropriate, compassionate care.

By sharing knowledge and staying up to date, we can improve care outcomes for those living with invisible and complex conditions.

Here is the link: https://www.ausdoc.com.au/.../a-gp-guide-to-hypermobile.../

Please share with as many as possible to help create more awareness and better outcomes. This condition is more common than first thought.

An introductory guide for GPs on hypermobile Ehlers-Danlos syndrome – a clinical diagnosis that can be made in the primary setting

20/06/2025

This aligns with my post earlier today about too many told they just have anxiety. POTS is still largely dismisses or not even acknowledged. With an average 7 years for diagnosis. We need to work hard to improve this 💜🦓

Our latest research reveals key differences in how affects adolescents vs adults — and how far we still have to go.

📍 Australians with POTS face an average diagnostic delay of nearly 7 years — over two years longer than the 4.9-year global average reported in international studies (Shaw et al., 2019).

📍 Adolescents report more severe orthostatic intolerance

📍 Adults experience more bladder & gut symptoms

📍 But quality of life is equally poor across both groups.

Some good news?

In South Australia, diagnostic delays have improved in recent years — from an average of 12.9 years to just 1.6 years for those diagnosed since 2019.

But across Australia, too many are still being misdiagnosed, dismissed, or left without care.

65% of patients were told their symptoms were "just anxiety"

Over half had presented to an emergency department before diagnosis
Patients saw an average of 5 doctors before receiving a correct diagnosis.

"Our findings reflect a cohort who could access a specialist clinic — not equitable access across Australia."

We need urgent investment in early recognition, access to care, and treatment tailored to young Australians, especially women and girls.

Symptom burden, quality of life, and diagnostic journey of people with postural orthostatic tachycardia syndrome, Australia, 2021–24: a descriptive patient registry data study (2025-06-19)

You can access the full study details here:
https://doi.org/10.5694/mja2.52710

20/06/2025

When have you been told… "I'm sure it’s just anxiety?”
It’s a phrase that is too often used.
A phrase that dismisses and delays.
And, in some cases, nearly destroys lives.

My daughter had a heart attack at 17 — due to a SCAD (Spontaneous Coronary Artery Dissection).
She was told it was "just anxiety."
Initially sent home.
Not taken seriously.
But it wasn’t anxiety. It was life-threatening.

That moment changed everything for me.
It opened my eyes to the devastating impact of not being heard or validated — especially when the symptoms are invisible, complex, or don’t "fit the textbook."

It’s why I created The Invisible Health Network — so that lived experiences like hers, and mine, and yours can be heard, validated, and used to create real change in how invisible conditions are treated. We need more education, more awareness and more training.

💬 Share your story below.
Because your voice matters.
Because someone out there needs to know they’re not alone.
Because the system can’t change unless we speak up — together. We can learn from each other.

Let’s rewrite the narrative. One story at a time.

15/06/2025

🧭 Welcome to The Invisible Health Network
Sustainable solutions for complex, invisible conditions

We’re so glad you’ve found us.

The Invisible Health Network exists to revolutionise health care and create a new future for those living with complex, invisible conditions — and the professionals who provide care for them.

For too long, invisible symptoms have been misunderstood. Delayed diagnoses, misrecognition, and a lack of awareness have left many feeling unseen and unsupported. People experience trauma on their health journey, have symptoms managed in fragments, and health providers become worn down or experience burn out due to complexity. We’re here to change that.

Through sustainable, evidence-based, and lived-experience-informed professional programs, we work to:

✅ Support people with complex conditions with physical and psychological overlap, for example, hypermobility and associated conditions, dysautonomia, fatigue, pain conditions, neurodivergence & trauma-related conditions.
✅ Educate, empower, and support health service providers to deliver trauma-informed, whole-person care, affirming care to improve recognition, diagnosis and management of complex conditions.
✅ Bridge the gap between medical, psychological & real-world experiences.
✅ Raise visibility, improve outcomes, and create systemic change.
✅ Support lived-experience leaders — including entrepreneurs, business owners, professionals, coaches, and advocates — with business and professional growth.

Because care shouldn’t depend on whether your condition is visible.
Because you and your patients deserve gold standard treatment.
Because healing — and helping — needs a new model.
With the significant increase in complex health conditions a new system is urgently needed to provide better care.

Whether you’re a clinician, a health professional or service provider, a practitioner, a coach, or someone living with an invisible condition — you belong here.

Follow us, tag a friend who needs this, and stay tuned for updates on:

🧭 Our Clinical Compass evidenced-based education program for health providers based on our COMPASS-FIVE model: Interdisciplinary Framework for Complex Care (C5-IFCC).
👩‍💻 The Invisible CEO: support for professionals, entrepreneurs, and leaders with lived experience of invisible illness.
🎙 Our podcast - Shine the Spotlight: Unseen, Unspoken & Unstoppable
🧡 Movement stories
📚 Resources, research and events

Let’s build a world where invisible conditions are met with sustainable care - for both the individual and the professional.

#