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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Sudden long distance sight problem in one eye

Started by tell johnson Jul 14. 0 Replies

I have ehlers danlos classical and have noticed a sudden loss of long sight in my left eye. The left eye is now very blurry and i am now needing to wear glasses. I have seen an ophthalmologist who…Continue

Please help Bundaberg

Started by Tracey. Last reply by mazinoz Dec 8, 2019. 2 Replies

I am looking for a gp that can diagnose eds in the Bundaberg area. Can anyone help Continue

Actually getting recommended Pain Meds in Brisbane?

Started by mazinoz Dec 8, 2019. 0 Replies

Has anyone managed to find a GP or specialist in Brisbane or Qld even who will actually prescribe either Tramadol or Palexia? Both work well for me but I get the "you're an addict, hypochondriac,…Continue

Brisbane specialists

Started by kelly webster. Last reply by mazinoz Dec 8, 2019. 7 Replies

Hi there. It took 10 years to get my daughter diagnosed with EDS by a geneticist. Apart from the constant pain and subluxations she is starting to get bladder and heart issues. Do you have any…Continue

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LokiZanpha103 updated their profile
Sep 3
tell johnson posted a discussion

Sudden long distance sight problem in one eye

I have ehlers danlos classical and have noticed a sudden loss of long sight in my left eye. The left eye is now very blurry and i am now needing to wear glasses. I have seen an ophthalmologist who has ruled out anything obvious but i am concerned it could be related to my ehlers danlos. The ophthalmologist was not a student of ehlers danlos and was not helpful at all. Am also wondering if it could be related to impinged nerve in the cervical base of the neck caused by my flaccid neck muscles. …See More
Jul 14
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MBee91 updated their profile
Mar 4
mazinoz replied to Tracey's discussion Please help Bundaberg
"You could try showing your current GP this article: https://www.ncbi.nlm.nih.gov/books/NBK1279/ or ask to be referred to a rheumatologist or geneticist for assessment. GP's 99% of the time are hopeless at diagnosing it and you will have to…"
Dec 8, 2019
mazinoz posted a discussion

Actually getting recommended Pain Meds in Brisbane?

Has anyone managed to find a GP or specialist in Brisbane or Qld even who will actually prescribe either Tramadol or Palexia? Both work well for me but I get the "you're an addict, hypochondriac, neurotic, malingerer" routine 99% of time. Moral indignation x 100!NSAID'S work but have hiatus hernia due to EDS/HM and 2 -3 bowel movements / day despite FODMAP diet. Trying turmeric but not sure it has any benefit over ibuprofen. Cutting out dairy, gluten, caffeine helped. Have cheese, yoghurt,…See More
Dec 8, 2019
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mazinoz replied to kelly webster's discussion Brisbane specialists
"Sorry for reviving old thread. Is there any chance he treats as well?  Does he prescribe Tramadol or Palexia at all? Or is he abhorrent to using pain meds? Latest on these: https://www.ncbi.nlm.nih.gov/books/NBK1279/ includes cannabinoids. Our…"
Dec 8, 2019
Liz Hunt left a comment for Kaitlyn Rae
"Hi Kaitlyn, you were so kind and messaged me about my daughter. Your message went to spam so apologies for the delay in replying. You poor love i have just read what your dealing with and in comparison my daughter is very lucky. I do hope you are…"
Nov 8, 2019
Suzanne and Kaitlyn Rae are now friends
Oct 23, 2019
Kaitlyn Rae updated their profile
Oct 22, 2019
Kaitlyn Rae left a comment for Liz Hunt
"Hello Liz!  I have been suffering with symptoms of VEDS for most of my life but I also have hyper mobility and symptoms associated with HEDS for about the last decade or so. Has your 23 year old since gotten tested at all? Does she have any…"
Oct 22, 2019
Lelly H E A Mather posted a status
"What kind of doctor should I get a referral to, who diagnoses autonomic dysfunction. My GP is clueless"
Oct 18, 2019
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Vanessa Evans posted a status
"Hello, Just wondering if anyone sees Sydney Rheumatologist - Neil McGill and your thoughts please. Thank you."
Sep 3, 2019
0 Comments
Julie Downey replied to Janet Jordan's discussion Airway affected by voice box
"I had breathing issues and was tested and dx with "vocal cord spasm". Cold air makes me cough, swallowing tablets can be hard, and hard to not choke on food and drink sometimes. Also known as 'hyperventilation syndrome'"
Aug 7, 2019
Danny Bates replied to Janet Jordan's discussion Airway affected by voice box
"Also, be careful when taking bicarb!! At least two hours after taking any other medicine. Bicarb contains chemical compounds, hence it can help but also interact with other medication badly."
Jul 15, 2019
Danny Bates replied to Janet Jordan's discussion Airway affected by voice box
"Hi Janet. Try taking B1 and B2 histamine blockers I.e. Telfast and Ranitidine. I was taking up to 800mg telfast when I was in flare up. Also anxiety can cause your throat closing issues, jaw, depression etc. Think about your symptoms and I assume…"
Jul 15, 2019
Danny Bates replied to kelly webster's discussion Brisbane specialists
"She will have 'Mitral Valve Prolapse ', most likely. Heart specialist, bladder issues are muscle related and obviously flexible connective tissue. Hip replacement if bones are damaged. Otherwise, muscle condition and BPC 157 for healing…"
Jul 15, 2019
Danny Bates replied to Belle's discussion URGENT - DISLOCATING COLLARBONE
"BPC 157 or Body Protecting Compound 157. You inject it twice a day into your injuries. It helps you heal, you only get it from a geneticist. I use it for 1 year now and I'm walking again (40 y/o male), not far but still walking. Do your…"
Jul 15, 2019
Danny Bates replied to Vanessa's discussion What age did your gastrointestinal problems begin?
"Dismotality or poor digestion, sorry auto correct."
Jul 15, 2019
Danny Bates replied to Vanessa's discussion What age did your gastrointestinal problems begin?
"I have EDS. Disloyalty I strongly believe is created by excess histamine from over active mast cells 'Mast Cell Disorder'. Telfast twice a day kids will change your daughter's life out of site. Then once the EDS flare up calms down,…"
Jul 15, 2019
Danny Bates replied to Vanessa's discussion What age did your gastrointestinal problems begin?
"No and it starts when you are born. You need to try and work out what is causing the issues and stop her eating it. This will create other ongoing issues in her body if you don't."
Jul 15, 2019

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