Ehlers-Danlos Australia

17/06/2026

Watch here: https://m.youtube.com/watch?v=o0myoP8wJv8&feature=youtu.be

16/06/2026

This is a very gritty look at some extreme cases. So while recommended please look after your mental health when considering/watching this.

13/06/2026

Many of us were sick and ignored prior to Covid and only now just starting to get some interest now more people are getting sick with autonomic dysfunctions like POTS.

For years, patients were told their dizziness, exhaustion and racing hearts were caused by anxiety. Now doctors say a little-known condition is emerging as one of Australia’s fastest-growing post-Covid health challenges > https://bit.ly/4oqMsO3

07/06/2026

Remember to take the National Pain Survey and/or Kids in Pain Survey to help bring data about experiences of pain in Australia.

Two landmark surveys shaping policy, funding, and services for millions of Australians living with chronic pain - adults and children alike.

06/06/2026

04/06/2026

We're so proud to share that the POTS Foundation Community membership is now FREE — made possible by our founding partner, Sodii. That means patients, carers, family & friends all can join and benefit from our community webinars and take advantage of our partner discounts without any charge. Thank you, Sodii, for believing in this community.

https://potsfoundation.org.au/become-a-member/

03/06/2026

Cerebrospinal Fluid Leaks (CSF) and Ehlers-Danlos Syndromes (EDS).
Give us a Droplet 💧 if you have a csf leak

The first week of June is CSF leak week that supports central and spinal csf leaks where the cerebrospinal fluid that cushions your brain and spine (encapsulated by the dura) leaks out causing headaches when upright, nausea, tinnitus, brain fog etc.
Some people with EDS are at risk of having spontaneous CSF leak due to all the connective tissue in the dura being weak. That’s why it’s important to share about CSF leaks as a comorbid neurological issue in EDS.

Testing is done with a mixture of MRIs, myelograms and diagnostic blood patches. Some csf leaks can repair with rest, but others may need blood and/or fibrin patches, or other surgical interventions to seal the leak.

💧
For more info check out: https://spinalcsfleakaustralia.org



Hashtags

03/06/2026

This week is another Comorbid awareness with CSF leak week.

01/06/2026

30/05/2026

𝐀𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐃𝐨𝐞𝐬𝐧'𝐭 𝐄𝐧𝐝 𝐇𝐞𝐫𝐞

Put a 🦓 or 🧡 showing you will continue pushing for awareness!
Just because awareness month is over doesn’t make our passion for awareness wane. It’s important to keep the good fight going. It’s only with your help can we get the large number of interactions that gets our voice heard to new people!

𝐄𝐡𝐥𝐞𝐫𝐬-𝐃𝐚𝐧𝐥𝐨𝐬 𝐒𝐲𝐧𝐝𝐫𝐨𝐦𝐞𝐬 𝐀𝐮𝐬𝐭𝐫𝐚𝐥𝐢𝐚

www.ehlersdanlosaus.com
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