Ehlers-Danlos Australia

20/05/2026

🙌 𝐇𝐚𝐧𝐝𝐬 𝐮𝐩 𝐟𝐨𝐫 𝐄𝐃𝐒/𝐇𝐒𝐃 𝐀𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 🙌
🤚 🖐️ 🧡 🦓
Awareness only goes so far if the entire herd is not involved. Let’s see how many likes, comments and shares we can get! Let’s make this big to show we care about getting awareness far and wide!
🙌
𝐄𝐡𝐥𝐞𝐫𝐬-𝐃𝐚𝐧𝐥𝐨𝐬 𝐀𝐮𝐬𝐭𝐫𝐚𝐥𝐢𝐚

www.ehlersdanlosaus.com

19/05/2026

𝐅𝐥𝐞𝐱𝐢𝐛𝐢𝐥𝐢𝐭𝐲 𝐯𝐬 𝐇𝐲𝐩𝐞𝐫𝐦𝐨𝐛𝐢𝐥𝐢𝐭𝐲
When we are called “bendy” in EDS/HSD it’s because our joints are hypermobile. Flexibility is an entirely different thing and it’s a healthy thing! Flexibility is great for our body and can be learnt through proper stretching exercises stretching our muscles.

Hypermobility can’t be learnt and isn’t healthy for our body. It’s to do with our ligaments not muscles. You can have Hypermobility and have no flexibility - they are dubbed “stiff zebras” and often occur due to our ligaments being so weak our muscle tighten to keep our joints together.

EDS/HSD is Hypermobile not flexible or hyper flexible and the hypermobility is just one aspect of a systemic connective tissue problem.

𝐄𝐃𝐒/𝐇𝐒𝐃𝐀𝐮𝐬

www.ehlersdanlosaus.com

18/05/2026

𝐓𝐡𝐞 𝐦𝐚𝐧𝐲 𝐝𝐨𝐜𝐭𝐨𝐫𝐬 𝐨𝐟 𝐄𝐃𝐒/𝐇𝐒𝐃
What is your most helpful doctor?

EDS/HSD isn’t “just being flexible.”
Because connective tissue is found throughout the entire body, EDS/HSD can affect joints, nerves, blood vessels, digestion, the heart, immune system, spine, bladder, eyes, skin and more.

Many people end up needing a whole team of specialists just to manage one condition — cardiology, gastroenterology, neurology, rheumatology, genetics, pain management, physiotherapy, immunology, neurosurgery and beyond.

It’s systemic. It’s complex. And it deserves understanding, research and proper care.🧡 🦓

𝐄𝐃𝐒𝐀𝐮𝐬

www.ehlersdanlosaus.com

18/05/2026

It’s still awarness month and we need more awarnesss for our conditions!

16/05/2026

𝐄𝐃𝐒/𝐇𝐒𝐃 - 𝐃𝐢𝐬𝐨𝐫𝐝𝐞𝐫𝐬 𝐭𝐡𝐚𝐭 𝐣𝐮𝐬𝐭 𝐤𝐞𝐞𝐩𝐬 𝐠𝐢𝐯𝐢𝐧𝐠
This disorder just keeps giving and giving. If it’s not one thing it’s another.

What are some of the unwanted “gifts” it’s given you?

𝐄𝐡𝐥𝐞𝐫𝐬-𝐃𝐚𝐧𝐥𝐨𝐬 𝐀𝐮𝐬𝐭𝐫𝐚𝐥𝐢𝐚

www.ehlersdanlosaus.com

15/05/2026

𝐑𝐄𝐃𝐒 𝟒 𝐕𝐄𝐃𝐒 𝐃𝐚𝐲

To add to our REDS4VEDS day Natasha has graciously shared what it’s like for her as someone with Vascular EDS.
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I’ve just found out at 35 years old that I have vascular Ehlers-Danlos Syndrome (vEDS), a rare genetic connective tissue disorder that affects the body’s collagen, particularly blood vessels and organs.

When I look at the symptoms now, so many things I thought were “normal” my whole life suddenly aren’t. Medical issues that never had answers. Health scares that escalated to almost losing my life. Symptoms I sought medical advice for more than 10 years ago that were brushed off, unexplained or never fully connected.

Now, all at once, they make sense.

The hardest part is knowing I now need to have my 6-year-old daughter tested too. As a parent, that fear is hard to put into words. You question everything and wonder what this could mean for her future and quality of life.

vEDS is a life-threatening condition with no cure. I now live knowing I’m at risk of arterial dissections, aneurysms and organ rupture at any time. Something as simple as lifting, straining, surgery, pregnancy or even everyday injuries can carry serious risks. On top of that, the chronic pain, instability, fatigue and progressive nature of connective tissue disorders can slowly take away mobility and independence over time.

May is EDS Awareness Month, and awareness of rare conditions like this matters so much. Many people living with vEDS or other invisible illnesses look completely “fine” on the outside while silently fighting battles most people could never imagine. ♥️

For more info and links:
https://www.ehlersdanlosaus.com/red4veds
𝐄𝐡𝐥𝐞𝐫𝐬-𝐃𝐚𝐧𝐥𝐨𝐬 𝐀𝐮𝐬𝐭𝐫𝐚𝐥𝐢𝐚

www.ehlersdanlosaus.com

14/05/2026

𝐑𝐞𝐝𝐬 𝐟𝐨𝐫 𝐯𝐄𝐃𝐒 𝐃𝐚𝐲
❤️ if you have vEDS

During EDS awareness day there is a specific day for vascular EDS (vEDS) awareness. VEDS is a rare type of EDS that is caused by faulty type III collagen from the COL3A1 gene and rarely COL1A1 that is autosomal dominate heterozygous mutation. It’s usually inverted but can be a spontaneous mutation.

It impacts approx 1 per 90,000 people. Genetic testing is needed to confirm a diagnosis if minimum criteria is met.

More info: https://www.reds4veds.org
https://www.ehlersdanlosaus.com/vascular-veds

𝐄𝐡𝐥𝐞𝐫𝐬-𝐃𝐚𝐧𝐥𝐨𝐬 𝐀𝐮𝐬𝐭𝐫𝐚𝐥𝐢𝐚

www.chiariaustralia.com.au

12/05/2026

12/05/2026

𝐉𝐨𝐢𝐧𝐭 𝐇𝐲𝐩𝐞𝐫𝐦𝐨𝐛𝐢𝐥𝐢𝐭𝐲 𝐚𝐧𝐝 𝐭𝐡𝐞 𝐁𝐞𝐢𝐠𝐡𝐭𝐨𝐧 𝐒𝐜𝐚𝐥𝐞
The Beighton Scale is a tool commonly used to assess joint hypermobility. The tool checks 5 points (little finger, thumb, elbow, knee and back) and gives a point for each limb (so if you can do it on both left and right you get 2 points) for a total of 9 possible points.

What’s considered a positive Beighton is scoring 5 or more in adults (6/9 In prepubescent and 4/9 in 50+ years). A positive Beighton just means you are positive for generalised joint hypermobility.

As with any tool it has limitations (assess select joint groups and ignoring others) and can be used inappropriately (used as the only diagnostic tool to diagnose hEDS).

Generalised Joint Hypermobility (GJH) is a part of the Ehlers-Danlos Syndromes, but is not enough to diagnose EDS with just this tool alone. GJH is also seen in other disorders (Marfans, Loeys Dietz etc) and also can occur without it being part of a medical disorder.

Please don’t try and perform these as pushing joints past their normal range of motion can cause harm. They are best only done minimally under/for medical assessment.

𝐄𝐡𝐥𝐞𝐫𝐬-𝐃𝐚𝐧𝐥𝐨𝐬 𝐀𝐮𝐬𝐭𝐫𝐚𝐥𝐢𝐚

www.ehlersdanlosaus.com