EDSAUS - Ehlers Danlos Syndrome Support in Australia

Aussie support for those with Ehlers-Danlos Syndrome and their families

This group is for Aussies who have Ehlers-Danlos Syndrome and their families, a place for support, information, compassion and understanding

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EDSAUS Ning Hiatus Update – September 2024

Started by Angelo Condell Sep 30. 0 Replies

Hi everyone! Just posting an update for anyone visiting this page.This EDSAUS Ning website is still in hiatus. This website is not currently in use. If you are in need of support and/or information…Continue

Tags: update, hiatus, 2024

EDSAUS hiatus

Started by Kylie Lang Oct 27, 2022. 0 Replies

Update: October 2022.  This support site is currently in hiatus.  More news in 2023.  In the meantime please refer to The Ehlers-Danlos Society for reliable information …Continue

Eds aware doctors/specialists hunter valley or Sydney

Started by Demi. Last reply by Demi Dec 19, 2021. 2 Replies

Hi lovelies,I am new and was just wondering if anyone new of some good doctors and/or specialists in the Hunter Valley/Sydney areas? I was diagnosed in 2012 I wasn't told what type I have, but I have…Continue

what causes "cigarrette-paper" scars to appear?

Started by Dorothy Jul 10, 2021. 0 Replies

can they occur spontaneously, and why would they do this? i have had a few since i was young. theyre quite shocking, i cant understand how they would develop without some kind of external force or…Continue

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Angelo Condell posted a discussion

EDSAUS Ning Update – September 2024

Hi everyone! Just posting an update for anyone visiting this page.This EDSAUS Ning website is still in hiatus. This website is not currently in use. If you are in need of support and/or information relating to living with rare conditions including the Ehlers-Danlos and Joint Hypermobility syndromes, you may wish to contact the Rare Voices Australia: RARE Helpline. Please follow this link to access the RARE Helpline:…See More
Sep 30
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Melissa Tonkin is now a member of EDSAUS - Ehlers Danlos Syndrome Support in Australia
Feb 12
Welcome Them!
Angelo Condell liked Kylie Lang's discussion EDSAUS hiatus
Jul 22, 2023
Angelo Condell updated their profile
Jul 22, 2023
Halo posted a blog post

pharmaceutical insensitivity

I've been looking around to find out why I am largely unaffected by Hallucinogens. I found something about some people being born with little, no or deformed 5HT2A receptors in the serotonergic system which could be an explanation.This would also account for non standard reactions to antidepressants and anaesthetics.This has been my experience since childhood. Aspirin will knock a fever on the head, Paracetamol can prevent a migraine from starting and Ibuprofen can reduce swelling but pain…See More
Jun 5, 2023
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Kylie Lang posted a discussion

EDSAUS hiatus

Update: October 2022.  This support site is currently in hiatus.  More news in 2023.  In the meantime please refer to The Ehlers-Danlos Society for reliable information https://www.ehlers-danlos.com/See More
Oct 27, 2022
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Sue Hutley is now a member of EDSAUS - Ehlers Danlos Syndrome Support in Australia
Oct 6, 2022
Welcome Them!
Jenna liked Alessandra Brejcha's discussion Rheumatologist in Melbourne Victoria?
Aug 20, 2022
L D updated their profile
May 17, 2022
Kay Allen updated their profile
Apr 4, 2022
Jane Johnson updated their profile
Mar 7, 2022
Demi replied to Demi's discussion Eds aware doctors/specialists hunter valley or Sydney
"Hi I have hypermobile but my geneticist is going to run some tests in the new year"
Dec 19, 2021
Cindersfella replied to Demi's discussion Eds aware doctors/specialists hunter valley or Sydney
"What type of EDS do you have, It is important to know that information, so you maybe guided in the right direction,"
Dec 19, 2021
Halo posted blog posts
Oct 27, 2021
Dorothy posted a discussion

what causes "cigarrette-paper" scars to appear?

can they occur spontaneously, and why would they do this? i have had a few since i was young. theyre quite shocking, i cant understand how they would develop without some kind of external force or factor, but i like to believe otherwise. other cigarette scars i have are from scrapes and bumps. i cant remember the cause of these ones, if they have any.thanks for any information you can provideSee More
Jul 10, 2021
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Demi liked Lachlan's discussion NSW Specialist
Jun 8, 2021
Demi posted a discussion

Eds aware doctors/specialists hunter valley or Sydney

Hi lovelies,I am new and was just wondering if anyone new of some good doctors and/or specialists in the Hunter Valley/Sydney areas? I was diagnosed in 2012 I wasn't told what type I have, but I have so many health problems for 30 I've had to find most things out about my condition on the internet. Hoping to get some more answers and insights about eds and what type I have. Any help is greatly appreciated! Thanks so muchSee More
Jun 8, 2021
2 Comments
Demi replied to Freddie's discussion help- hypermobile eds, hypotonia, and rapid deterioration
"Hi Freddie, Sorry to hear you are having such an active at the moment I hope your pain eases soon lovely. When I was first diagnosed in 2012 my healthy rapidly declined and I was mostly bed ridden for the better part of 5+ years started to come…"
Jun 8, 2021
Freddie posted a discussion

help- hypermobile eds, hypotonia, and rapid deterioration

looking to know whether this is normal/if there could be other underlying causes:I (18) was diagnosed with hEDS about six months ago (lived relatively normally until ending up with a bout of bronchitis that eventually went away but seemed to trigger the serious onset of most of my symptoms), and have continued to decline pretty rapidly since then. At the moment, I'm diagnosed with hEDS, IBS (I have a very restricted diet to manage this), GORD, and POTS, along with low muscle tone/hypotonia…See More
Jun 8, 2021
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Amy updated their profile
Jun 8, 2021

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