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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Please help Bundaberg

Started by Tracey Apr 18. 0 Replies

I am looking for a gp that can diagnose eds in the Bundaberg area. Can anyone help Continue

Having children

Started by Sarah Jade Shotter Apr 11. 0 Replies

Hey everyone, I am a newbie to the forum but I have some questions. I am 20 and my boyfriend and I were considering kids in the next few years but I am worried about the risk of miscarriage as well…Continue

Tags: obgyn

People with EDS in Perth

Started by Ellie Moir. Last reply by Ellie Moir Apr 11. 2 Replies

Just thought I would mention that Tony at Rehabilitation Technology at Fiona Stanley Hospital is great and deals in EDS patients if you can see him under the CAEP program he can give free braces and…Continue

Tags: Specialists, Perth

Prolotherapy in South Australia

Started by hazel francis. Last reply by Karen Mar 24. 3 Replies

My daughter has EDS type 3 and we are interested in trying prolotherapy injections. Does anyone know of a doctor who only charges a flat fee for multiple injections rather than $90 per injection?Continue

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Latest Activity

Tracey posted a discussion

Please help Bundaberg

I am looking for a gp that can diagnose eds in the Bundaberg area. Can anyone help See More
Apr 18
Sarah Jade Shotter updated their profile
Apr 11
Sarah Jade Shotter posted a discussion

Having children

Hey everyone, I am a newbie to the forum but I have some questions. I am 20 and my boyfriend and I were considering kids in the next few years but I am worried about the risk of miscarriage as well as making my condition worse. I know he is concerned about risking the kid having EDS too. Do any of your fellow zebras have any advice or have you had kids since the diagnosis and everything was ok?Thank you in advance :)See More
Apr 11
Ellie Moir replied to Ellie Moir's discussion People with EDS in Perth
"I'm not sure if theres a particular person to over see it (other than your GP and idk of any good EDS aware ones), but Krista Makin runs sort of an EDS rehabilitation program at Sir Charles Gairdner hospital and she refers out to whoever is…"
Apr 11
Peter Scullard replied to Ellie Moir's discussion People with EDS in Perth
"My kids see Kevin Murray and a whole lot of other specialists.  Is there anyone who can co-ordinate these specialists (some are public and some are private)? My son is getting to be very complex and I think he needs someone to oversee the whole…"
Apr 11
Ellie Moir posted a discussion

People with EDS in Perth

Just thought I would mention that Tony at Rehabilitation Technology at Fiona Stanley Hospital is great and deals in EDS patients if you can see him under the CAEP program he can give free braces and stuff, and that Krista Makin and Kevin Murray (rheumatologists) are great.See More
Mar 28
Jill updated their profile
Mar 26
Karen replied to hazel francis's discussion Prolotherapy in South Australia
"What is prolotherapy please?"
Mar 24
hazel francis replied to hazel francis's discussion Prolotherapy in South Australia
"How often do you have injections and how many do you have?"
Mar 16
Alexandra replied to hazel francis's discussion Prolotherapy in South Australia
"My prolotherapy on my knees and shoulders costs me a flat rate of 460 after Medicare and private health"
Mar 13
Cindersfella replied to David Henderson's discussion Adelaide contacts
"David what type of EDS does your daughter have as there are lots of info out there, It is best if you talk to a genetics Councillor, because they will point you in the right direction. Don't Google It because every case is different and some…"
Mar 8
Cindersfella left a comment for Megan
"Yes I am, the teams at both hospitals and Anne Turner have been truly amazing, I hope everybody who has a rare genetic disease get such great service from what ever hospital/medical teams ."
Mar 8
Cindersfella replied to SW's discussion Vascular EDS
"Good afternoon My family have  vascular EDS thanks to me, I am the genetic link which carried the broken genes. OK! the best place to start for getting tested is at a teaching hospital like St Vincent or Westmead hospital, and they usually do…"
Mar 6
Cindersfella left a comment for Megan
"Megan you are in very safe hands with that team, Good luck."
Mar 6
Cindersfella replied to Katrina Garvin's discussion Diagnosis then what?
"depends on what your symptoms are as to what direction you take, The issue that we all have is the same, The symptoms of EDS are so varied that we all need to have individual medical plans. The first step is to gather all your medical diagnoses and…"
Mar 6
Meg Grant replied to SW's discussion Vascular EDS
"Hi, 1.you need to get your gp to refer you for genetic counselling at a public hospital (that's where you will get all the testing and information you need). 2.You need to get your boys tested at some stage. Most major hospitals in Australia…"
Mar 3
hazel francis and Carolyn Rowe are now friends
Mar 3
Hayley selman posted a status
"We live in dalby any one near by"
Mar 3
Stacey replied to Katrina Garvin's discussion Diagnosis then what?
"Hi i’ In the same boat. I moved to Melbourne and found a doctor who referred me to a rheumatologist at the royal Melbourne when I was first diagnosed 2 years ago I was referred to Chris Callahan at the Austin and it was only meant to take 6 to…"
Mar 2
hazel francis posted a discussion

Prolotherapy in South Australia

My daughter has EDS type 3 and we are interested in trying prolotherapy injections. Does anyone know of a doctor who only charges a flat fee for multiple injections rather than $90 per injection?See More
Mar 1

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