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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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!

Hervey Bay - local GP? Recommendations?

Started by Jenny C Dec 2, 2016. 0 Replies

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.

Hi, new here, old and undiagnosed

Started by Michael. Last reply by Michael Oct 25, 2016. 9 Replies

Thanks for granting me access - I'm around 60 and just a little bit crippled from things that would have been great to have treated as a young kid.  By treated I guess I mean given notice that I…Continue

URGENT - DISLOCATING COLLARBONE

Started by Belle. Last reply by Pug Oct 2, 2016. 7 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

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Latest Activity

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
Kathy French posted a status
"My 17 year old son has Eds type 2. Is he to old to go through Westmead Hospital for re-assessment.We are in Newcastle and need some advice"
Aug 26, 2016
Pug replied to Belle's discussion URGENT - DISLOCATING COLLARBONE
"http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3898097/ seems they're using allograft here mostly...which like I said seems to be out in Australia. Still...worth asking the question! "
Aug 26, 2016
Pug replied to Belle's discussion URGENT - DISLOCATING COLLARBONE
"Wow, that's interesting. I was told by the geneticist that they wouldn't test for the FBN1 gene  because i didn't meet criteria for a full marfans diagnosis (mainly due to no ectopic lentis or dural ectasia). They also said I…"
Aug 26, 2016
Belle replied to Belle's discussion URGENT - DISLOCATING COLLARBONE
"Hi Pug, thank you for your reply. When I say rare type, I mean that when my family and I had our genetic testing done including the DNA test our results returned with a gene called the FBN1 gene that has only been found in our family out of all the…"
Aug 26, 2016
Pug replied to Belle's discussion URGENT - DISLOCATING COLLARBONE
"Hi belle. What do you mean by a rare type? Eds commonly intersects with marfans clinically although have you been tested for the fibrilin mutation specifically or just have the habitus? I have sternoclavicular subluxation daily as well but it…"
Aug 26, 2016
Belle updated their profile
Aug 25, 2016

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