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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Brisbane specialists

Started by kelly webster Mar 4. 0 Replies

Hi there. It took 10 years to get my daughter diagnosed with EDS by a geneticist. Apart from the constant pain and subluxations she is starting to get bladder and heart issues. Do you have any…Continue

NSW Specialist

Started by Lachlan. Last reply by Fran Mac Dec 10, 2018. 1 Reply

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

Airway affected by voice box

Started by Janet Jordan. Last reply by Fran Mac Dec 6, 2018. 2 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 Fran Mac Dec 4, 2018. 8 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

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Kirstie Barker updated their profile
Mar 10
kelly webster posted a discussion

Brisbane specialists

Hi there. It took 10 years to get my daughter diagnosed with EDS by a geneticist. Apart from the constant pain and subluxations she is starting to get bladder and heart issues. Do you have any recommendations of specialists (not physio or OT), more rheumatologist, geneticist etc who understands EDS. We are also wondering if there's a procedure to stop her hip from constantly 'slipping'. Thank you. Look forward to hearing back from you :) My daughter is 19 years old.
Mar 4
0 Comments
Fran Mac replied to Lachlan's discussion NSW Specialist
"Lachlan, You might need to go to Sydney. Dr Felicity Collins Geneticist who knows EDS is at Royal Prince Alfred Hosp.  There is a backpackers near there. Good Luck, Fran"
Dec 10, 2018
Fran Mac replied to Janet Jordan's discussion Airway affected by voice box
"Hi Janet, I have thought further about your query. EDS people can have food allergy/intolerances. You may be having an allergic reaction. I suggest you speak to your Dr. about this. Allergist, Dr. Richard Baker, Macquarie St Sydney we find very good…"
Dec 6, 2018
Fran Mac replied to JadeJobber's discussion Having children
"Hi Jade I hesitate to write this but I guess you want both sides of the story. I have EDS diagnosed after my children were fully grown. Both my children also have EDS. The births were both forceps delivery as they both presented facing the wrong…"
Dec 4, 2018
Fran Mac replied to Janet Jordan's discussion Airway affected by voice box
"Hi Janet, I have stiffening of jaw, respiratory muscles contract and stay tight and if affects my breathing. We havent worked out why but this improves after I drink half a teaspoon of bicarbonate of soda in water.It usually takes about 15 minutes…"
Dec 4, 2018
Fran Mac replied to Tracey's discussion Please help Bundaberg
"Hi Tracey dont know if you have anyone yet but Dr David Coman in Bris can make a diagnosis but need to wait a while for appt. Cheers Fran"
Dec 4, 2018
Fran Mac replied to SW's discussion Vascular EDS
"Hi re diagnosis.  Dr Felicity Collins a geneticist at Royal Prince Alfred Hosp is a specialist in EDS. My geneticist in Brisbane has ordered the gene test for EDS and cost is $250 from the states.Good luck. Fran"
Dec 4, 2018
Courtney Charmaine Senior updated their profile
Nov 30, 2018
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, 2018
2 Comments
Janet Jordan updated their profile
Aug 27, 2018
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, 2018
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, 2018
1 Comment
Susan R updated their profile
Jun 23, 2018
Meg Grant posted a status
"Seeking pain management physician in Melbourne, Victoria with experience with hyper mobility eds?"
Jun 20, 2018
0 Comments
Naomi Nation updated their profile
Jun 17, 2018
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, 2018
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, 2018
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, 2018
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, 2018

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