Not Just Bendy

20/11/2025

Today is Transgender Day of Remembrance 🤍🩷💙 🕯️

As we wrap up the celebrations and festivities of Transgender Awareness Week, we take a day to mourn and remember the beautiful trans lives of those lost to transphobic violence and discrimination 🕯️

We take an extra moment to remember our trans zebras too. We will always remember those we have lost, and will always continue to provide a safe space where our trans zebras can be comfortable and themselves. 🤍🩷💙

16/11/2025

This is what we have suspected for a while….

14/11/2025

We finally framed our community poster from this year's EDS & HSD Awareness Month! 🦓✨

It took us a little while to get it right, our wonderful leader Sharon put time and effort into collaging it to fit into the frame, but we wanted to make sure everyone's contributions fit in.

It now proudly sits in our reception area for everyone to see 😊

We love our little community and thank everyone who contributed earlier in the year into helping us show our bonds through community participation and to help spread awareness 💙

11/11/2025

Remembrance Day marks the historical day during the First World War when the sounds of violence finally ceded, and Germany retreated, bringing a physical end to the war.

Originally starting off as Armistice Day, the nature of it evolved into Remembrance Day after the events of the Second World War to commemorate all who died in the line of duty ever since that First World War.

We mark this day each year by giving a minute of silence for those who have fallen - on the 11th hour, of the 11th day, of the 11th month.

Lest we forget.

11/11/2025

So exciting! It'll be incredible to see the results of this and how it positively effects the creation of the new hEDS criteria in 2026 💙

10/11/2025

You're never too young to be an advocate ✨

Check out these amazing socks one of our little zebras wore for Crazy Sock Day!

It's so wonderful to see the next generation of zebras raising awareness for EDS (and it's fun!) 💙

Please note that we are only seeing new clients aged 10 and up.

04/11/2025

Such an exciting step forward for the future of hEDS and HSD research! We can't wait to see what studies sprout from this new knowledge 💙

31/10/2025

Such an important breakdown on how severely POTS can impact people when it comes to school and studying 👇

30/10/2025

We're almost at the end of Dysautonomia and POTS Awareness Month, and summer is just around the corner here in Australia ☀️

As the weather begins to heat up, POTS symptoms can often worsen. To help cool the body, blood vessels expand and more blood is circulated to the skin’s surface - but this also increases the load on your heart, potentially worsening symptoms like fatigue, tachycardia and dizziness 😵‍💫

To help you prepare for the summer heat, we've compiled some of our favourite tips for staying cool and managing POTS symptoms ✨

If you have any other great tips for managing POTS symptoms in summer we'd love for you to share them in the comments!

30/10/2025

An important update on the HEDGE study!

It's great to see that the results of this study are leading research on hEDS and HSD in the right direction ❤️

28/10/2025

A huge thank you to The Ehlers-Danlos Society for sharing the story of how this perioperative guide was created between our principal physiotherapist Sharon Hennessey, Dr. Jason Lam and Bianca Comfort!

The feedback we've seen from everyone on how much of a difference this guide has made to people's lives really drives home why collaboration is so important.

Together we can help to educate people and create better care for those living with hypermobility, EDS, HSD, POTS and MCAS.

🏥🧑🏽‍⚕️Common Surgery Concerns for People with Hypermobility: Questions & Answers

A collaboration between The Ehlers-Danlos Society's CORE Network of Excellence members, Sharon Hennessey, of Not Just Bendy, Dr. Jason Lam , and Bianca Comfort of Comfort Psychology has produced a comprehensive perioperative management guide.

“This evidence-based resource gives healthcare providers the tools they need to safely care for hypermobile patients during surgery, including considerations around dysautonomia and mast cell activation syndrome.

“We realized that while having a medical guide was crucial, our clients needed their own version – one that explained these complications in plain language and gave them practical strategies to advocate for themselves. That’s why we also created a patient-friendly guide.”

The guide was developed following discussions at The Ehlers-Danlos Society CORE Network of Excellence meeting in Baltimore, USA, earlier this year. Together, we dazzle!

Read all about it here: https://www.notjustbendy.com/blog/surgical-management-eds-hypermobility/

28/10/2025

A very special thank you to Helen and Rebecca from Helen Walker Occupational Therapy for giving our team a very comprehensive presentation on the roles of Occupational Therapy and Social Work for patients with EDS and HSD!

Helen shared with us the care and understanding she brings to her work with her own lived experience with HSD, POTS and other conditions she lives with. As an occupational therapist she helps break down barriers and solve issues in many areas of life for people, providing an essential service that tailors care all the way from psychosocial to assistive technology specifically to each individual.

Rebecca shared with us her passion and determination as a social worker, relaying to us how she helps people with complex cases as with social functioning, building connections, as a personal advocate and improving the quality of people's lives.

Familiarising our team with how other allied health professionals help and benefit those with hypermobility is incredibly important, assuring they know what other professionals can offer and when a patient might need to be referred for OT or to a social worker.

We were so thrilled with this opportunity to forge strong bonds with each other, further ensuring that we all continue to provide people with hypermobility the best care possible.