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

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

Members

Events

Photos

  • Add Photos
  • View All
 

Latest Activity

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
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
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
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
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
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
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

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

     
     
     

    © 2018   Created by Kylie Lang.   Powered by

    Badges  |  Report an Issue  |  Terms of Service