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
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 hiatus
Started by Kylie Lang Oct 27. 0 Replies 0 Likes
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 0 Likes
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 0 Likes
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
help- hypermobile eds, hypotonia, and rapid deterioration
Started by Freddie. Last reply by Demi Jun 8, 2021. 1 Reply 0 Likes
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…Continue
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"Hi I have hypermobile but my geneticist is going to run some tests in the new year"
"What type of EDS do you have, It is important to know that information, so you maybe guided in the right direction,"
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
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
"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…"
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
"I too would be interested."
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