"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.…"
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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OT recommendation in Perth
Started by Katie. Last reply by Katie on Sunday. 3 Replies 1 Like
Hi all,Does anyone know of a good OT in Perth? I'm having some issues with my fingers and hands, and remember reading about finger splints. Not sure if I could tolerate them... but it would be good…Continue
Hi, new here, old and undiagnosed
Started by Michael. Last reply by Ulrike Maria Evered Sep 19. 7 Replies 0 Likes
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
Specialists In Sydney?
Started by Jessica Bowie. Last reply by Bee Sep 1. 1 Reply 0 Likes
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
URGENT - DISLOCATING COLLARBONE
Started by Belle. Last reply by Pug Aug 28. 6 Replies 0 Likes
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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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
"
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"
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."
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?"
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…"
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"
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!
"
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…"
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…"
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…"
Belle posted a discussionURGENT - 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
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
"
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…"
"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…"
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…"
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