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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Hervey Bay - local GP? Recommendations?

Started by Jenny C 10 hours ago. 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. 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. 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

Specialists In Sydney?

Started by Jessica Bowie. Last reply by Frilled Lizard Oct 1. 2 Replies

Hello lovely people, i'm looking for information on specialists who manage EDS (doctors, OTs and physios) in Sydney. I've been seen by the CTD clinic at westmead and the narrabeen sports clinic is…Continue

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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.
10 hours ago
Jenni Vine updated their profile
Nov 23
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
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
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
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
Frilled Lizard liked Jessica Bowie's discussion Specialists In Sydney?
Oct 1
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
Dolores Jones updated their profile
Sep 30
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
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
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
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
Madonna updated their profile
Aug 29
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
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
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
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
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
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

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