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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URGENT - DISLOCATING COLLARBONE

Started by Belle 22 hours ago. 0 Replies

I have a rare type of Ehlers Danlos that is crossed over with Marfan Syndrome. I suffer from many dislocations a day and have had multiple surgeries to stabilise joints along with Physio. In the past…Continue

How many people plan on having children despite their diagnosis?

Started by Mark. Last reply by Grace Aug 16. 56 Replies

Many of us are not aware of our diagnosis before starting a family... Out of curiosity, how many people here would still choose to have children if they had known of their Dx and likelihood of having…Continue

Call for Participants: Interviews about fatigue

Started by nika. Last reply by Mark Jul 24. 1 Reply

Hi all,I haven't posted here for ages (seems like most activity takes place on facebook these days, and I have posted this in a few relevant facebook groups, too, so apologies for cross-posting).I'd…Continue

Orthopedic Surgeon (neck) Victoria

Started by Joji S Jun 20. 0 Replies

Anyone know of a EDS knowledgeable Orthopedic surgeon in Victoria? I need someone to look at my neck instability that doesn't show on lying down MRI's?Any help would be greatContinue

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Belle updated their profile
22 hours ago
Belle posted a discussion

URGENT - DISLOCATING COLLARBONE

I have a rare type of Ehlers Danlos that is crossed over with Marfan Syndrome. I suffer from many dislocations a day and have had multiple surgeries to stabilise joints along with Physio. In the past two years I have started to dislocate the inside of my collarbone (as shown in picture) It dislocates everyday sometimes causing shortness of breath, nerve pain, neck pain ect. My surgeons are wanting to do some kind of stabilisation surgery but have no experience in doing so. I was wanting to find…See More
22 hours ago
Roxanne updated their profile
Monday
Grace and Mark are now friends
Aug 16
Grace replied to Mark's discussion How many people plan on having children despite their diagnosis?
"Hi Belinda, Thanks for responding. I do have quite severe EDS, I can only hope that by the time I have children there will be more testing and better management for EDS patients.  Thanks Grace "
Aug 16
Mark commented on Mark's status
"Hi Grace, Had to add you as a friend first in order to send messages.  (Forgot about that aspect of this site).  I don't come here often these days.  Anyways, I have CEDS.  I didn't go to the Sydney conference due to…"
Aug 16
Belinda Fisher replied to Mark's discussion How many people plan on having children despite their diagnosis?
"Hi Grace- I haven't visited this site in ages, got a notification and thought why not!? Your post is very interesting. Both my kids have EDS, my boy is far more affected than my daughter. But apart from some handwriting support and being able…"
Aug 16
Grace replied to Mark's discussion How many people plan on having children despite their diagnosis?
"I can add some insight into the genetics of all this. Im 24, and have just seen my geneticist, Prof Eric Haan, and I have a semi-medical background (animals specifically -yep dogs can get EDS). What I got from him is that there are huge amounts of…"
Aug 15
Mark posted a status
"Anyone tried LDN (low dose naltrexone) for chronic fatigue/pain?"
Jul 24
Mark posted a status
"Has anyone found a helpful doc in Adelaide? I want to trial a few ideas to treat my chronic fatigue but always end up with useless GPs."
Jul 24
Mark replied to nika's discussion Call for Participants: Interviews about fatigue
"It almost sounds like you need a psychological dx in addition to the physical one in order to qualify for your study?  Maybe you should clarify.   I only have EDS with chronic fatigue.  (no depression, PTSD etc). Otherwise a large %…"
Jul 24
Jane Locke posted a status
"Doctors in Tasmania ?"
Jun 20
Joji S posted a discussion

Orthopedic Surgeon (neck) Victoria

Anyone know of a EDS knowledgeable Orthopedic surgeon in Victoria? I need someone to look at my neck instability that doesn't show on lying down MRI's?Any help would be greatSee More
Jun 20
Lelly H E A Mather replied to Jessica's discussion Specialist in melbourne
"I live in Mooroopna near Shepparton if you do not mind the drive to Shepparton, my orthopedic surgeon Mr Ian Chritchly is very nolagable in eds and can get you to a ginetasust for diagnosis sorry about spelling  "
Jun 14
Daniella Zaparo posted a status
"I was astonished to see that on the website www.raisingchildren.net.au/a_z_disability.aspx it makes no mention of EDS"
May 26
striation posted a discussion

EDS aware/knowledgable dental practitioner

I was wondering whether anyone knows of a dental practitioner - either a general dentist or specialist - in the Northern Rivers or southern Qld who has experience with or understands EDS and its inherent implications...See More
May 20
Jess updated their profile
May 20
Tonii posted a discussion

Pregnancy how did you cope????

I am pregnant and having big problems with constant dislocations. Did other lady's have premmie baby's???
May 19
John posted a discussion

GP's North Perth

Does anyone know of any GP's North or the River, the closer to the Dianella/Mirrabooka area the better that has an interest in Ehlers Danlos and P.O.T.S etc. We've just moved up from Mandurah and out GP's there were amazing an so already seeing Kevin Murray and KidzClinic etc but now we just need a everyday GP for my partner and son. Thanks!  See More
May 14
Jessica replied to Jessica's discussion Specialist in melbourne
"I had my appointment with a DR Matthew Whillis and he was fantastic, didn't fob me off and diagnosed me with hypermobility type, is recommending to my GP i see a cardiologist to do a tilt table for pots. I really want to see a pain specialist…"
May 5

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