Not Just Bendy

24/03/2026

Well deserved win for all your hard work Chloe Wigg Art

16/03/2026

We encourage everyone to share Connective Tissue Disorders Network Australia's post to raise awareness for Loey-Dietz Syndrome this month! ❤️

12/03/2026

Could pelvic vein issues be linked to POTS & OI symptoms?

We'll be sharing breakdowns on the latest research for hEDS, EDS, HSD and it's many co-occuring conditions (like POTS and OI) over on our education branch's page, Hypermobility Project, from now on!

If you're looking to stay up to date with all that's happening with research, give us a follow over there ❤️

11/03/2026

It's incredible news that we finally have a date for the publication of the new diagnostic criteria for EDS & HSD!

We know that by improving the criteria, this will positively change the lives of a lot of people, leading people to a diagnosis and further onto the care and help they need.

We’re so excited for what’s ahead, and we're keeping our eyes peeled for all that juicy information come December 👀

Let us know if you're excited too!

10/03/2026

This was a fantastic summit!

This session across all 3 presentations in particular really highlighted the need for more female and AFAB centered EDS & HSD research - especially for the effects of menopause on HSD & EDS patients, which at current has next to no research at all.

10/03/2026

10/03/2026

Were you formally taught about hypermobility during your training?

Hypermobility isn’t rare in clinical practice.
What’s rare is clinicians being formally taught how to assess it.

Many healthcare professionals recognise the signs but still feel unsure about:

🔍 Whether assessment sits within their clinical scope
💬 How to communicate their findings clearly
📄 When referral is appropriate
🕜 How to avoid contributing to patient diagnostic delay

That’s exactly why I created the Diagnosing Hypermobility: Clinical & Ethical Masterclass.

Registration for our first official run is NOW OPEN!

What’s included in the masterclass:

🕜 Five 20-minute on-demand modules
💻 One 90-minute live interactive Q&A
📄 Clinical flowcharts, client resources and community support
⭐ Access to international hypermobility expert Sharon Hennessey

Designed for busy clinicians, the entire course takes approximately 3 hours and can be completed over 3 months.

During the beta run:

✅ Participants rated the content 10/10
✅ Said their confidence discussing hypermobility increased by 10/10
✅ Were extremely likely to recommend the masterclass to other clinicians

Our beta run completely sold out last year.

Registration is open for two weeks only.

If you're interested, we recommend securing your place now! We’ve already filled over two dozen spots in less than a day from our waitlist!

Practices wishing to register multiple clinicians can contact info@hypermobilityproject.com regarding site access and registration.

🔗 Learn more and register via the link in the comments 👇

09/03/2026

Some experiences are hard to explain until someone turns them into music. 🎶

One of our clients recently shared with us a song they wrote and composed about living with dysautonomia and we love it 💜

“Dysautonomia” by Xoe

Living with dysautonomia can be complex, invisible, and often misunderstood. Art like this can really capture the emotional side of living with an invisible illness that impacts you daily.

We’re so incredibly proud to see members of our community expressing their experiences through creativity, music and the arts!

Give it a listen and support the artist if you can 💜

And to everyone sharing their stories through art, music, writing, or advocacy, your voice matters.

You can listen to it on Spotify via the ink in the comments 👇

08/03/2026

💃 March 8th is International Women’s Day 💃

Today we celebrate women’s achievements, leadership and strength in a world where gender bias is still prevalent.

For women living with hypermobility, EDS or HSD, healthcare inequity is not uncommon. We know just how many still face systemic barriers and discrimination.

When it comes to treatment, care and diagnosis of symptomatic hypermobility conditions, many women still go through several of the things below 👇

🥀 Symptoms being attributed to anxiety or stress
🥀 Dismissal or minimisation of pain
🥀 Gaslighting, not being believed or told you were faking
🥀 Misdiagnosed with a psychiatric condition before your diagnosis
🥀 Given lower quality pain management

For women of colour, LGBTQIA+ women, and disabled women, these disparities can be even more pronounced due to racial and systemic bias layered on top of gender bias.

When hypermobility is already misunderstood, these inequities can compound - delaying care, increasing medical trauma, and impacting long-term health outcomes.

International Women’s Day is not only about celebration, it’s also about reflection and action. It’s about recognising the wide gap women still face in society when it comes to all opportunities of life.

Women deserve to be heard.
Women deserve timely, respectful care.
Women deserve better.

07/03/2026

Assessing the Risk of Gynecologic and Obstetric Diagnoses in Patients with Ehlers-Danlos Syndromes

A major new study by Imbroane et al. (2026) has found that people with Ehlers–Danlos syndromes (EDS) recorded as female in healthcare data are at increased risk of a range of gynaecological and obstetric conditions.

The research analysed over 50,000 patients with EDS aged 18–44 and compared them with age-matched patients without EDS.

Importantly, the study grouped EDS together based on medical coding. Most participants were classified as “unspecified EDS,” and smaller numbers had hypermobile EDS (hEDS), classical EDS (cEDS), or vascular EDS (vEDS). The study was not designed to determine whether risks differ significantly between subtypes.

Key findings (EDS as a broad group):

Compared with patients without EDS, those with EDS were:

- Nearly 7× more likely to be diagnosed with endometriosis

- Around 3–4× more likely to experience pelvic pain or painful in*******se

- Over 9× more likely to have pelvic organ prolapse

- 5–10× more likely to experience urinary or f***l incontinence

During pregnancy, patients with EDS were also at increased risk of:

- Gestational hypertension and pre-eclampsia

- Postpartum haemorrhage

- Spontaneous miscarriage

- Preterm pre-labour rupture of membranes

- Caesarean delivery

They were also more likely to undergo fertility testing and assisted reproductive treatment.

This study strengthens evidence that gynaecological and pregnancy-related complications are more common in people with EDS overall. However, it does not prove that every EDS subtype carries the same level of risk. Further research is needed to better understand differences between subtypes and to improve specialist care pathways. The paper can be found here: https://journals.sagepub.com/doi/10.1177/15409996261418483?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed

07/03/2026

It's horrendous to hear of the grave misinformation about hEDS and HSD published by HealthNZ on their website - conflating that hEDS and HSD are now only HSD, that they are psychological conditions, and claiming without evidence that they do not have a genetic component.

Their words were not backed by evidence-based science and they did not provide references to where this information came from. Misinformation like this is dangerous and affects the lives of zebras who are already struggling.

We stand with all the zebras in Aotearoa, and support Ehlers-Danlos Syndromes Aotearoa New Zealand in petitioning to have this information corrected.

Doctors are divided over treatment for a rare disorder, but some living with it say the official advice is misleading.

04/03/2026

Possible Trigger warning: NDIS Discussion.

We don't talk about the NDIS on here much due to the high stress associated with the whole system from our therapists and clients. But I couldn't help post this as it is a possible win for clients with complex and overlapping disabilities.

HUGE FEDERAL COURT RULING

From the below linked ABC article:

"The Justice and Equity Centre, which represented Mr Eastman, said the Federal Court had clarified the NDIA must view participants according to the interplay of their multiple conditions — not just those that gave them entry into the scheme — as well as other environmental factors, such as transport available where they live."

"Somebody isn't just a bundle of disabilities or diagnoses, but instead a whole person and that whole person is what the NDIS needs to be taking into account when it looks at what their needs are."

"The Justice and Equity Centre, which represented Mr Eastman, said the Federal Court had clarified the NDIA must view participants according to the interplay of their multiple conditions — not just those that gave them entry into the scheme — as well as other environmental factors, such as transport available where they live."

https://www.abc.net.au/news/2026-03-04/ndis-agency-loses-significant-legal-case-scooter-funding/106405304?utm_campaign=abc_news_web&utm_content=link&utm_medium=content_shared&utm_source=abc_news_web&fbclid=IwY2xjawQUuUVleHRuA2FlbQIxMABicmlkETFtVDZVamlKV3pGaVhwS3JEc3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHkuHhQwRZZpNZUtV3BGOQjWhWpqflAbPVmpodCzUb2EghE5m_O1WMfQpLjDo_aem_qpckqIrwa-QxAo8dAhXUeg

The agency running the NDIS has lost a legal case experts say could have significant implications for how future funding decisions are made.