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

Forum

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

help- hypermobile eds, hypotonia, and rapid deterioration

Started by Freddie. Last reply by Demi Jun 8, 2021. 1 Reply

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

Rheumatologist in Melbourne Victoria?

Started by Alessandra Brejcha. Last reply by Karen Jun 8, 2021. 1 Reply

Is there a Rheumatologist very knowledgable about EDS in Melbourne Victoria? Preferably one who sees both teenagers and Adults? Thank You Continue

Members

Events

Photos

  • Add Photos
  • View All
 

Latest Activity

L D updated their profile
May 17
Kay Allen updated their profile
Apr 4
Jane Johnson updated their profile
Mar 7
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
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
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
Amy updated their profile
Jun 8, 2021
Trish SD updated their profile
Jun 8, 2021
Deborah Jeffrey updated their profile
Jun 8, 2021
Karen replied to Alessandra Brejcha's discussion Rheumatologist in Melbourne Victoria?
"I too would be interested."
Jun 8, 2021
Karen updated their profile
Jun 8, 2021
Profile IconSabina Lloyd, Melanie, Vanesa and 137 more joined EDSAUS - Ehlers Danlos Syndrome Support in Australia
Jun 8, 2021
Lisa Clarke updated their profile
Jun 8, 2021
Kylie Lang posted a status
"Would anyone be interested in purchasing EDS zebra themed keyrings I made over the years? They are $7ea or 2 for $10 with free postage"
Jun 8, 2021
mazinoz replied to A.C.'s discussion Updates?
Apr 30, 2021

Chat

Active Conversations

Disconnected

    Disconnected

    You are disconnected from chat. Connect to join the chat.

    Suspended From Chat

    Sign up to chat on EDSAUS - Ehlers Danlos Syndrome Support in Australia.

    Sign Up

     
     
     

    © 2022   Created by Kylie Lang.   Powered by

    Badges  |  Report an Issue  |  Terms of Service