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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Airway affected by voice box

Started by Janet Jordan Aug 27. 0 Replies

Hi  has anyone experienced with their EDS their voice box closing over and limiting airflow into lungs.I found this out as I was admitted to hospital coughing up blood. And as not all Dr's are versed…Continue

Having children

Started by JadeJobber. Last reply by Janet Jordan Aug 27. 7 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

NSW Specialist

Started by Lachlan Aug 16. 0 Replies

hi looking for a specialist for our 17 & 19 year old children. We are located in the Hunter Valley.Tia TraceyContinue

EDS event Perth, Western Australia

Started by Ellie Moir Jun 5. 0 Replies

Just thought i would share this event here since they said to share..."EDS Community Move and Groove Event RegistrationDate/Time: June 9th, 2018 - 4pmAddress: Charlesworth Ballet Institute, 76…Continue

Tags: Perth, event, EDS

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Janet Jordan posted a discussion

Airway affected by voice box

Hi  has anyone experienced with their EDS their voice box closing over and limiting airflow into lungs.I found this out as I was admitted to hospital coughing up blood. And as not all Dr's are versed with EDS I have found the literature on line. Also your voice can change,swallowing and speech can all be affected.  Any advice????JanetSee More
Aug 27
0 Comments
Janet Jordan updated their profile
Aug 27
Janet Jordan replied to JadeJobber's discussion Having children
"Hello  I had my daughter 8 weeks of 40yrs as I had lots and lots of surgeries and I also have acute and chronic Osteoarthritis, Fibromyalgia and EDS. I as blessed I went into remission up to when she was 4ish.Also there is no set rule that you…"
Aug 27
Lachlan posted a discussion

NSW Specialist

hi looking for a specialist for our 17 & 19 year old children. We are located in the Hunter Valley.Tia TraceySee More
Aug 16
0 Comments
Susan R updated their profile
Jun 23
Meg Grant posted a status
"Seeking pain management physician in Melbourne, Victoria with experience with hyper mobility eds?"
Jun 20
0 Comments
Naomi Nation updated their profile
Jun 17
Cindersfella replied to JadeJobber's discussion Having children
"Jade where are you in Australia for starters, secondly It is a long road you will travel from now on with EDS what ever type you have Do you me and all you Dr's a favour. Start  being responsible for your health and start keeping a copy of…"
Jun 12
Cindersfella replied to JadeJobber's discussion Having children
"Here is some info from England which might help you   https://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome#inheritance have a great discussion."
Jun 9
JadeJobber replied to JadeJobber's discussion Having children
"I am trying to get in to them and have given them a referral but there is a long wait time and because I am currently studying and don't live in a city it makes it even harder to find a time that works"
Jun 9
Cindersfella replied to JadeJobber's discussion Having children
"As far as your diagnosis is concerned,  you need to get a positive diagnosis because it has implications that shouldn't be ignored, Have you seen a genetics Councillor about your diagnosis"
Jun 9
Cindersfella left a comment for NATALIE MURPHY
"Welcome, I hope that you find us friendly and helpful, may you have a life without to many incident"
Jun 8
JadeJobber updated their profile
Jun 8
JadeJobber replied to JadeJobber's discussion Having children
"Hey, sorry I forgot to include it. I have hypermobility but they suspect vascular because I have had pulmonary embolisms Thank you :)"
Jun 8
Cindersfella replied to JadeJobber's discussion Having children
"The question I have before anyone can answer your question is what Type do you have, as the issues you face are different between the various types Eg. a person with a classical EDS is different to a person who has EDS typeIV I would love to give…"
Jun 8
Ellie Moir posted a discussion

EDS event Perth, Western Australia

Just thought i would share this event here since they said to share..."EDS Community Move and Groove Event RegistrationDate/Time: June 9th, 2018 - 4pmAddress: Charlesworth Ballet Institute, 76 Goodwood Parade, BurswoodWe will have 4 sessions covering: Classical Ballet, Jazz Dance, Pilates, and Stretch & StrengthEach session will run for 20-30 minutes and be lead by a professional who is aware of Ehlers-Danlos Syndrome and Hypermobility Syndromes.Please wear clothing that you are comfortable…See More
Jun 5
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Debbie Mudd liked mazinoz's discussion EDS knowledgeable physios in Brisbane + hip osteoarthritis.
May 28
Susan Haitas posted a status
"Has anyone else out there in the EDS community had similar conditions with hEDS?"
May 22
0 Comments
Susan Haitas posted a status
"And this is beacause I wanted to raise awarness to the fact that, ALL of my associated conditions are thought to be caused by my EDS."
May 22
0 Comments
Susan Haitas posted a status
"Hi As a newbie to the EDS discussion, you guys maybe wondering why I have such a long and scary list of conditions under my diagnosis of EDS"
May 22
0 Comments

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