Ehlers-Danlos Australia

05/09/2025

Patty Stott and Susan Chalela, MPT, joined us at our Global Learning Conference 2024, discussing "Upper Cervical Instability - Presentation and Non-surgical ...

05/09/2025

Feels like this most days…what’s your favourite EDS meme? Share below!

Create your own https://imgflip.com/memegenerator/

04/09/2025

Having EDS can mean for some of us we are at risk for spontaneous csf leaks.

Cerebrospinal fluid is the fluid that surrounds the brain and spinal cord. This clear liquid cushions the brain and spinal cord, supplying them with nutrients.

03/09/2025

Our September speaker is Melissa Williams who will be talking about Bendy Brains: Understanding Hypermobility in Neurodivergent People on Thursday 25th September 2025 @ 7pm AEST.

Did you know that joint hypermobility is more common in neurodivergent people, including those with ADHD? While being extra flexible might seem like a fun party trick, for many, it comes with challenges like pain, fatigue, digestive issues, and frequent this webinar, we’ll explore the connection between neurodivergence and hypermobility, how to recognize symptoms, and what steps to take if you suspect a hypermobility spectrum disorder or Ehlers-Danlos syndrome. We’ll also cover practical solutions—how to care for your body, where to seek diagnosis and support, and whether NDIS funding might be an option.Whether you’re a parent looking out for your child or an adult navigating these experiences yourself, this session will equip you with knowledge and next steps to better support your health and wellbeing.

Melissa (she/her) is an integrative physiotherapist, educator, supervisor, and small business owner living on Wurundjeri Country, Melbourne.

Melissa is a proud co-owner and director of Zebras Australia, an interdisciplinary healthcare clinic dedicated to putting an end to less-than-positive healthcare experiences for those living with unwanted bodily pain, fatigue and tension. In just three years, Zebras Australia has grown into a trailblazing team of twenty healthcare professionals who provide in-person and virtual consultations, movement classes, and community events. Their offerings — spanning physiotherapy, exercise physiology, occupational therapy, and osteopathy — are designed to center the body and foster self-enquiry, connection, and meaningful change.

Zebras Australia’s unique, integrative approach recognizes trauma as a fundamental human experience and welcomes people of all genders, sexualities, bodies, abilities, neurotypes, and cultures. In 2024, Zebras Australia earned national recognition as a state finalist in the Telstra Best of Business Awards (‘Championing Health’) and was designated as an international Network of Excellence by the Ehlers-Danlos Society. The team at Zebras Australia are leading the way in whole-person care for rare chronic conditions and committed to being the most sustainable workplace for care providers.

Professionals attending will receive a Certificate of Attendance to help them keep track of their professional development.

To find out more/book tickets visit the website: http://www.adhdsupportaustralia.com.au/events

Unable to attend and would like to see a recording of this and past talks? Check out our Patreon membership site: https://www.patreon.com/ADHDSupportAustralia

Join our Newsletter list to receive news of events/meetups/slides: http://eepurl.com/iqqlow

The talk commences 7:00pm AEST (Sydney time) so if you are not in this time zone please check using this link what time this will be for you- https://www.worldtimebuddy.com/

I look forward to seeing you there – Vivian

03/09/2025

LEGO made a minifigure of a character with the same disability as me! This is Sun Spider or Charlotte Webber. She was originally a fan-made character before being put into the Spider Verse movies and some comics as well. She has a condition known as Ehlers-Danlos Syndrome or EDS that causes hyper-flexibility but also a lot of pain, especially in her legs. She uses both a wheelchair (a normal wheelchair when out of costume and a cool, 8-legged spider-themed one for when she's in costume) and crutches to get around. She isn't a big part of the movie, but it was awesome to know that a character with the same disability as me made it into such a big movie franchise. Having a physical toy version is just insane to me! ❤️

via _DodoMan_

03/09/2025

03/09/2025

This study explored patients’ experiences with GPs managing their chronic non-cancer pain.

02/09/2025

https://pubmed.ncbi.nlm.nih.gov/40869462/

Background: Hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSDs) are prevalent, complex conditions marked by chronic pain, joint instability, and multisystem involvement. Despite affecting an estimated 1 in 500 individuals, these conditions remain poorly...

01/09/2025

September is Chiari awareness month. About 13% of Chiarians also concurrently have EDS and it impacts their surgical outcomes due to complex issues like CCI from the weak connective tissue.

31/08/2025

I live for the day when hypermobility isn’t considered the be all and end of all EDS for both sides. When patients don’t consider all hypermobility to start and stop with EDS (seen in so many other disorders, alone and without symptoms). Also that doctors don’t assume that all EDS is for the patient is hypermobility.

Hypermobility is important yes and there are now many groups and allied health out there dedicated to it specifically. However, for many with EDS it’s actually the least impacting feature. Connective Tissue Disorders are systemic and hypermobility is one of many features.

If your joints are hypermobile and causing you discomfort/pain/injury please do seek help how to rehabilitate them and safely maintain joints. Many people have joint hypermobility with minimal to no symptoms with some confusing flexibility and hypermobility (see a lot of health professionals confuse the two do don’t feel bad if you do).

To show you got this far please share a non-hypermobile feature of your EDS that you find the most difficult or even one you managed to work out some good support.

The problem we have as patients is that too often, EDS gets overlooked or reduced to “just hypermobility.” This misses the bigger picture and leaves patients without answers & help.

EDS isn’t just about being flexible or “double-jointed.” It’s a connective tissue disorder that can affect the entire body, from joints and muscles to skin, organs, and more.

This is why no two people with EDS present the same way. Some may struggle most with joint instability, others with gut issues, heart problems, or fatigue. Some with everything all at once. It’s complex. It doesn’t mean the patient is difficult or untreatable.

It’s means we need to look further than the ‘oh it’s just hypermobility’ statement.

What’s been your experience?

30/08/2025

Rare Voices Australia (RVA) Partner, Genetic Alliance Australia, is partnering with Belongside Families to host a free four-part webinar series for families exploring a genetic explanation for their child’s health or development.

❓𝐒𝐞𝐬𝐬𝐢𝐨𝐧 𝟏: 𝐂𝐨𝐮𝐥𝐝 𝐈𝐭 𝐁𝐞 𝐆𝐞𝐧𝐞𝐭𝐢𝐜?
If you’ve ever wondered whether there may be a genetic explanation for your child’s health or development, you’re not alone. Hear from Kathleen LaMarquand (a senior genetic counsellor), and Kim Bowan (parent of a daughter with SATB2 Associated Syndrome), as they share what to expect and how to prepare for the emotional and practical side of the diagnostic process.

Date: Tuesday, 2 September
Time: 12pm - 12:45pm (AEST)
Location: Zoom (online)

🔗Register to attend these sessions live or receive the video recording at: bit.ly/BF-Genetics0209

30/08/2025

Learn more about symptoms, diagnosis, and management on The Ehlers-Danlos Society website: https://www.ehlers-danlos.com/what-is-hsd/Venous insufficiency pla...