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. Last reply by Grace Mar 16. 4 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

Hervey Bay - local GP? Recommendations?

Started by Jenny C. Last reply by Jenny C Mar 15. 2 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.

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

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Latest Activity

harmony updated their profile
Mar 17
harmony posted a status
"Is there a card about EDS to carry in my wallet? Several disect and now a brain aneurysm. Confirmed alt COL3AI. GPs who are holistic Brisb?"
Mar 17
Grace replied to Grace's discussion Help for those with sore or dislocating hands :)
"I ended up trading in my iPad for a mini one for uni because I couldn't hold it long enough! The splints are so much better than the plastic or Velcro ones. The jeweller worked with my OT and a 3D modellor to design the splints. They were 3D…"
Mar 16
Jenny C replied to Grace's discussion Help for those with sore or dislocating hands :)
"Okay thanks heaps Grace.  They might be really helpful I find the ipad sooo heavy after a few minutes.  I love your jewelry splints too they are so much nicer than Velcro and tape and stuff lol.  How did your jeweller know how to make…"
Mar 16
Grace replied to Grace's discussion Help for those with sore or dislocating hands :)
"Hi jenny, I think it would work on an iPad if you had two, they aren't huge. I think they have some photos on their website! :)"
Mar 16
Jenny C replied to Grace's discussion Help for those with sore or dislocating hands :)
"Hi Grace thanks for sharing that! I'm wondering do you think it would work for holding an ipad too?"
Mar 16
Jenny C replied to Jenny C's discussion Hervey Bay - local GP? Recommendations?
"Hi Jessie lovely to hear from you. It's such a small community for us edsers isn't it. I've found a GP locally - again he doesn't have any eds experience. He was fascinated though and happy to have me as a patient. It's hard…"
Mar 15
Jessie Patricia Magarey replied to Jenny C's discussion Hervey Bay - local GP? Recommendations?
"Hi, I am near you in Maryborough.  I haven't found a GP that is really familiar with EDS but I have a good GP who is learning with me.  She is patient and careful.  I have a very good cardiologist and foot orthopaedic after 2…"
Mar 15
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

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