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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what causes "cigarrette-paper" scars to appear?

Started by Dorothy Jul 10. 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

Eds aware doctors/specialists hunter valley or Sydney

Started by Demi Jun 8. 0 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

help- hypermobile eds, hypotonia, and rapid deterioration

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

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

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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
Demi liked Lachlan's discussion NSW Specialist
Jun 8
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
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
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
Amy updated their profile
Jun 8
Trish SD updated their profile
Jun 8
Deborah Jeffrey updated their profile
Jun 8
Karen replied to Alessandra Brejcha's discussion Rheumatologist in Melbourne Victoria?
"I too would be interested."
Jun 8
Karen updated their profile
Jun 8
Profile IconSabina Lloyd, Melanie, Vanesa and 137 more joined EDSAUS - Ehlers Danlos Syndrome Support in Australia
Jun 8
Lisa Clarke updated their profile
Jun 8
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
mazinoz replied to A.C.'s discussion Updates?
Apr 30
A.C. updated their profile
Jan 12
A.C. posted a discussion

Updates?

Hi,I hope everyone is keeping safe and well in these difficult times. :)I was wondering whether there is another website for EDS support in Australia at the moment? This site has been a little quiet recently, and I was thinking perhaps EDS-AUS has moved to a different online location. Any updates?Also, does anyone know the contact address/P.O. Box for EDS-AUS? I'm currently working on a support network project with the GSNV, and cannot seem to find a physical address listed. Any information…See More
Jan 12
tell johnson posted a discussion

Sudden long distance sight problem in one eye

I have ehlers danlos classical and have noticed a sudden loss of long sight in my left eye. The left eye is now very blurry and i am now needing to wear glasses. I have seen an ophthalmologist who has ruled out anything obvious but i am concerned it could be related to my ehlers danlos. The ophthalmologist was not a student of ehlers danlos and was not helpful at all. Am also wondering if it could be related to impinged nerve in the cervical base of the neck caused by my flaccid neck muscles. …See More
Jul 14, 2020
MBee91 updated their profile
Mar 4, 2020
mazinoz replied to Tracey's discussion Please help Bundaberg
"You could try showing your current GP this article: https://www.ncbi.nlm.nih.gov/books/NBK1279/ or ask to be referred to a rheumatologist or geneticist for assessment. GP's 99% of the time are hopeless at diagnosing it and you will have to…"
Dec 8, 2019
mazinoz posted a discussion

Actually getting recommended Pain Meds in Brisbane?

Has anyone managed to find a GP or specialist in Brisbane or Qld even who will actually prescribe either Tramadol or Palexia? Both work well for me but I get the "you're an addict, hypochondriac, neurotic, malingerer" routine 99% of time. Moral indignation x 100!NSAID'S work but have hiatus hernia due to EDS/HM and 2 -3 bowel movements / day despite FODMAP diet. Trying turmeric but not sure it has any benefit over ibuprofen. Cutting out dairy, gluten, caffeine helped. Have cheese, yoghurt,…See More
Dec 8, 2019

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