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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Help for those with sore or dislocating hands :)

Started by Grace Feb 18. 0 Replies

Hi everyone,I stumbled upon a product a little while ago for holding my phone in my hand better and that I hope can help some others! I frequently dislocate my fingers and wrists, I've now got…Continue

Specialist in melbourne

Started by Jessica. Last reply by Halo Feb 13. 12 Replies

Hello, My name is Jessica. I am 21 and I have EDS Hypermobility type.My EDS effects me in a way that makes in very hard for me to work, I constantly dislocate my wrists, hand tendons, shoulders and…Continue

How many people plan on having children despite their diagnosis?

Started by Mark. Last reply by Halo Feb 13. 57 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

Adelaide Rhuematologist

Started by Leanne. Last reply by Des Dec 31, 2016. 1 Reply

Hi all, can anyone recommend a good Rhuematologist in Adelaide who knows about EDS?? Thanks and Merry Xmas!

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Grace posted a discussion

Help for those with sore or dislocating hands :)

Hi everyone,I stumbled upon a product a little while ago for holding my phone in my hand better and that I hope can help some others! I frequently dislocate my fingers and wrists, I've now got several metal splints made by a jeweller (check my index finger in the photos for one), so the idea of holding and using my iphone in one hand sucks. Then I found Popsockets (ironic name considering what I use it for). Its basically a small disc that sticks to the back of your phone or tablet and…See More
Feb 18
Halo posted a status
"I am getting real tired of medical professionals saying "WOW!""
Feb 13
Halo replied to Jessica's discussion Specialist in melbourne
"I live near Bendigo but get my GP to refer me to RMH for any clinics (and I am a regular at a few now) I get follow ups at their pain clinic every 6 months and the same for neurosurgery and cerebrovascular. ( I had a subarachnoid haemorrhage a few…"
Feb 13
Des replied to Leanne's discussion Adelaide Rhuematologist
"Paul Russo diagnosed me with HMS - I then went to Melbourne and saw Proffessor Chris O'Callagan (?) who diagnosed HEDS. Paul is ok but will just send you back to your GP to coordinate other doctors so you have to do your own research and work…"
Dec 31, 2016
Jenny C posted a discussion

Hervey Bay - local GP? Recommendations?

Hi all, I'm moving to Hervey Bay shortly and am wondering if there are any other edsers up that way and if so are there any eds aware GPs you could recommend in the area? Many thanks. Jenny.
Dec 2, 2016
Jenni Vine updated their profile
Nov 23, 2016
Michael replied to Michael's discussion Hi, new here, old and undiagnosed
"Today I had the best interaction with a GP that I have had since Adam and the snake had a barney over that apple.  All I had yesterday was more fear. Please relax with any recommendations for me and I will withhold judgement until appointments…"
Oct 25, 2016
Michael replied to Michael's discussion Hi, new here, old and undiagnosed
"I'd like some information at this point as my situation with the health system is unworkable, from me appearing to be without serious pain as I've had to hide it and pretend I was fine for over 45 years, and it is at home where I relax…"
Oct 24, 2016
Pug replied to Belle's discussion URGENT - DISLOCATING COLLARBONE
"Belle have you had any advice from the surgeon yet? Let us know how you're getting on. Wishing you well."
Oct 2, 2016
Frilled Lizard left a comment for Bee
"Hi Bee I have been very ill, so only just logged on for first time in ages. Would like to help you with finding specialists, need to know where you are. Liz"
Oct 1, 2016
Frilled Lizard liked Jessica Bowie's discussion Specialists In Sydney?
Oct 1, 2016
Frilled Lizard replied to Jessica Bowie's discussion Specialists In Sydney?
"Hi Bee Which area are you in? I can provide you with info, but need to know where. Liz"
Oct 1, 2016
Dolores Jones updated their profile
Sep 30, 2016
Katie replied to Katie's discussion OT recommendation in Perth
"In case anyone else is searching, I found an OT in booragoon - Camilla Holt. She normally only sees children, but was happy to help. She referred me on to a hand therapy unit to discuss splints, and the independent living centre for assistive tools.…"
Sep 25, 2016
Ulrike Maria Evered replied to Michael's discussion Hi, new here, old and undiagnosed
"Hi Michael, you are welcome,  I am very glad to hear your news. And finally welcome to the herd of zebras! Take care, Ulrike"
Sep 19, 2016
Michael replied to Michael's discussion Hi, new here, old and undiagnosed
"It's been a long time and a rocky road, but I have a diagnosis of EDS hypermobility type. Thank you Ulrike, and I hope everyone here is fortunate to get help when they need it. Michael"
Sep 19, 2016
Bee replied to Jessica Bowie's discussion Specialists In Sydney?
"I was just wondering, where did you go to get diagnosed in Sydney? I'm struggling to find doctors who won't sit there and laugh at me when I ask about EDS."
Sep 1, 2016
Madonna updated their profile
Aug 29, 2016
Pug replied to Belle's discussion URGENT - DISLOCATING COLLARBONE
"Kinesio tape is about the only thing I've found that will keep my shoulders a bit more stable... Have you tried taping them?"
Aug 28, 2016
Belle replied to Belle's discussion URGENT - DISLOCATING COLLARBONE
"Hi Pug, Thank you again for your reply. The did do the full genome test on me and my family, we actually waited 5 years in the public system to get it done. So in the end it cost us nothing.Have you found any kind of physio that helps you? I have…"
Aug 28, 2016

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