"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"
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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NSW Specialist
Started by Lachlan. Last reply by Fran Mac Dec 10, 2018. 1 Reply 0 Likes
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 0 Likes
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 0 Likes
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
Please help Bundaberg
Started by Tracey. Last reply by Fran Mac Dec 4, 2018. 1 Reply 0 Likes
I am looking for a gp that can diagnose eds in the Bundaberg area. Can anyone help Continue
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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…"
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…"
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…"
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"
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"
Janet Jordan posted a discussionAirway 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
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…"
Lachlan posted a discussionNSW Specialist
hi looking for a specialist for our 17 & 19 year old children. We are located in the Hunter Valley.Tia TraceySee More
Meg Grant posted a status"Seeking pain management physician in Melbourne, Victoria with experience with hyper mobility eds?"
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…"
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."
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"
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"
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"
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