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

Forum

Airway affected by voice box

Started by Janet Jordan. Last reply by Julie Downey Aug 7. 5 Replies

Hi  has anyone experienced with their EDS their voice box closing over and limiting airflow into lungs.I found this out as I was admitted to hospital coughing up blood. And as not all Dr's are versed…Continue

Brisbane specialists

Started by kelly webster. Last reply by Danny Bates Jul 15. 6 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

URGENT - DISLOCATING COLLARBONE

Started by Belle. Last reply by Danny Bates Jul 15. 8 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

Untitled

Started by Rachel Jun 21. 0 Replies

No Description

Members

Events

Photos

  • Add Photos
  • View All
 

Latest Activity

Vanessa Evans posted a status
"Hello, Just wondering if anyone sees Sydney Rheumatologist - Neil McGill and your thoughts please. Thank you."
Sep 3
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
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
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
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
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
Danny Bates replied to Vanessa's discussion What age did your gastrointestinal problems begin?
"Dismotality or poor digestion, sorry auto correct."
Jul 15
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
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
mazinoz replied to kelly webster's discussion Brisbane specialists
"I don't know about a procedure. But have seen a picture of a hip brace in Dr Brad Tinkle's book on EDS & HMS. It looks like a band that wraps around the leg and hip to help hold it in place. Try to sleep on back with pillows under…"
Jun 23
mazinoz replied to kelly webster's discussion Brisbane specialists
"Know what you mean about rare. Our family now diagnosed as mitochondrial MYOPATHY. But we inherit it as a dominent pattern. NORD want to study our family as it is unusual. Diagnosed MM by skin biopsy."
Jun 23
mazinoz posted a status
"Daily. Vit B2 200mg x2, acetyl-L-carnitine 500mg, choline+inositol 250mg of each, CoQ10 100mg x 2, B group vitamin, multivitamin. Buy online"
Jun 23
mazinoz posted a status
"Diagnosed as mitochondrial myopathy, not EDS-HMS. NORD's sites on MM & Glutaric Acidemia II - vitamin "cocktail" energy up, few migraines."
Jun 23
mazinoz posted a status
"Dresdens in West End Qld do the FL-41 tint for migraneurs on Zeiss lenses for much less than theraspecs or axon overseas. Multifocals too!"
Jun 23
Rachel posted a discussion

Untitled

No Description
Jun 21
Caitlin Wood posted a status
"Has anyone else had a leg go completely cold and been hurting for more than 24hrs but they can still move all their joints?"
May 22
margaret ann bowerman posted a status
"Iam needing more help live in coffs harbour have seen Dr Baggage any other helps please"
May 12
Fran Mac replied to kelly webster's discussion Brisbane specialists
"Hi Kelly, You may want to see David again.  My understanding is that they are finding more genes responsible for connective tissue problems. I have a lot of muscle probs associated with EDS. David gave me a recently published scientific paper…"
May 6
kelly webster replied to kelly webster's discussion Brisbane specialists
"Hi Fran. We did see him 3 years ago. Thanks"
May 6
Fran Mac replied to kelly webster's discussion Brisbane specialists
"Hi Kelly, Dr David Coman, Geneticist, is experienced in EDS. He is very bright, knowledgeable and easy to talk to .His ph no is 07 38329876 and he is in Brisbane CBD. Good luck. Its highly likely he will order genetic tests which are cheap. He sees…"
May 6

Chat

Active Conversations

Disconnected

    Disconnected

    You are disconnected from chat. Connect to join the chat.

    Suspended From Chat

    Sign up to chat on EDSAUS - Ehlers Danlos Syndrome Support in Australia.

    Sign Up

     
     
     

    © 2019   Created by Kylie Lang.   Powered by

    Badges  |  Report an Issue  |  Terms of Service