Chiari and Syringomyelia Australia

Chiari and Syringomyelia Australia Australian Group for those suffering from Chiari, Syringomyelia and related conditions

Chiari and Syringomyelia Australia is the biggest and longest running support group for people with these conditions in Australia. We are here for people with Chiari and/or Syringomyelia along with related condition and aim to spread awareness, advocacy and soon to become a non-proft organisation so we can raise money to fundraise and push for national awareness. We run a support group on face boo

k as well where our 2000+ strong membership has grown in strength and knowledge to help people through Australia and even New Zealand to get diagnosed and proper treatment faster.

07/01/2024

Our first lecture of 2024!

Join us: igfn.us/form/68m4_g

05/01/2024
01/01/2024

๐‡๐š๐ฉ๐ฉ๐ฒ ๐๐ž๐ฐ ๐˜๐ž๐š๐ซ ๐Ÿ๐ŸŽ๐Ÿ๐Ÿ’
Happy New Years to everyone and hopes that this new years brings new ideas, research and hope for us all.

www.chiariaustralia.com.au


#2024 ๐Ÿ’™

Itโ€™s weird to think CTs are only just over 50yrs old. MRIs are not that much younger almost about to have their 50th bir...
27/12/2023

Itโ€™s weird to think CTs are only just over 50yrs old. MRIs are not that much younger almost about to have their 50th birthday. That means we havenโ€™t tracked one entire generation yet. Western Medicine is so young when you think how most surgeries/medicines etc we havenโ€™t had enough time to see the impact over the course of an average life span. A lot of what was learnt by most med students will be redundant within their career. I know the knowledge about Chiari has changed a lot since I was diagnosed in almost 20yrs ago.

Happy Holidays to everyone this season however you spend it keep safe! from Chiari and Syringomyelia Australia          ...
25/12/2023

Happy Holidays to everyone this season however you spend it keep safe!
from Chiari and Syringomyelia Australia

๐ŸŽ„

The holidays are fast approaching and this is your reminder to make sure you have enough medications and backup scripts ...
17/12/2023

The holidays are fast approaching and this is your reminder to make sure you have enough medications and backup scripts to get you through the holiday break and any closures. Also always good to know if your local chemists closure times and a backup one nearby.

www.chiariaustralia.com.au

๐Ÿ’™

16/12/2023

Are you a parent or caregiver of a child or young person with special health care needs, chronic health conditions and/or disabilities?

Researchers are inviting those who are to take part in this online survey to help them understand how the health care system can be best designed to support the needs of you and your child.

๐Ÿ‘‰Scan the QR code on the image, or visit https://bit.ly/3sJuSMH for more information.

15/11/2023

National Conference on Hydrocephalus

11/11/2023

This survey seeks to investigate the role pet ownership and pet attachment might have in the health and wellbeing of people living with chronic condition/s. In particular, how people navigate accessing health and medical care while looking after their pets.

A lot of what started the link between EDS and CCI was Chiari patients who had complex Chiari.
03/11/2023

A lot of what started the link between EDS and CCI was Chiari patients who had complex Chiari.

โ€ŽShow Bendy Bodies with the Hypermobility MD, Dr. Linda Bluestein, Ep 77. Neurosurgical Insights from Paolo Bolognese, MD and Guest Cohost Pradeep Chopra, MD - 2 Nov 2023

21/10/2023

Advent of MRIs

16/10/2023

A wise woman once said โ€ฆ

We love you Edie โค๏ธ

๐–๐จ๐ซ๐ฅ๐ ๐’๐ฉ๐ข๐ง๐ž ๐ƒ๐š๐ฒSpine day is important to us due to Syringomyelia and many of us also having issues like scoliosis and in...
16/10/2023

๐–๐จ๐ซ๐ฅ๐ ๐’๐ฉ๐ข๐ง๐ž ๐ƒ๐š๐ฒ
Spine day is important to us due to Syringomyelia and many of us also having issues like scoliosis and in some rare cases spinal instabilities. The interaction between the spine and skull is an important element for Chiari and obvious for Syringomyelia!

The 16th of October is World Spine Day and we will be raising awareness for the spinal cord condition syringomyelia and scoliosis today.

https://www.worldspineday.org

๐‚๐ก๐ข๐š๐ซ๐ข ๐š๐ง๐ ๐’๐ฒ๐ซ๐ข๐ง๐ ๐จ๐ฆ๐ฒ๐ž๐ฅ๐ข๐š ๐€๐ฎ๐ฌ๐ญ๐ซ๐š๐ฅ๐ข๐š
www.chiariaustralia.org

16/10/2023

Mark your calendars, Occipital Neuralgia is receiving international recognition on October 25th. TWENTY SIX places throughout the world will be lighting up teal in support of Occipital Neuralgia Awareness Day! Niagara Falls, Lincoln Financial Field (Philadelphia Eagles Stadium), Calgary Tower, and Kurilpa Bridgeโ€ฆjust to name a few!
If you are able to view any of the illumination locations, please share your photos with us. We appreciate your support!

Dysautonomia awareness month this month
07/10/2023

Dysautonomia awareness month this month

Dysautonomia is a group of disorders that affect the autonomic nervous system. Many people with Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) also have a type of dysautonomia, such as postural orthostatic tachycardia syndrome (POTS) or orthostatic hypotension (OH).

The autonomic nervous system regulates bodily processes by balancing the opposing actions of the parasympathetic and sympathetic nervous systems.

If the autonomic nervous system does not function properly, a person may be in a constant state of โ€œfight or flightโ€ mode. It may be difficult to switch over to the โ€œrest and digestโ€ state which allows the body to fall asleep, stay asleep, and feel refreshed from sleep.

Joining the upcoming virtual event, EDS ECHO Summit: Fatigue, Causes, and Management, on October 21, Dr. Peter Rowe will discuss the importance of orthostatic intolerance (OI) as a common and treatable contributor to fatigue. โ 
โ 
Dr. Rowe will explain practical methods of identifying OI in the doctor's office setting. The talk will explain how to treat OI, emphasizing medication management as well as some conditions to consider when the expected improvements are not forthcoming.โ 

Dr. Rowe is a Professor of Pediatrics in the Division of Adolescent and Young Adult Medicine at the Johns Hopkins University School of Medicine. โ 

Agenda and registration information can be found here: https://www.ehlers-danlos.com/events/fatigue/

๐Š๐ž๐ž๐ฉ ๐…๐ข๐ ๐ก๐ญ๐ข๐ง๐  ๐Ÿ๐จ๐ซ ๐€๐ฐ๐š๐ซ๐ž๐ง๐ž๐ฌ๐ฌ ๐‚๐ก๐ข๐š๐ซ๐ข ๐š๐ง๐ ๐’๐ฒ๐ซ๐ข๐ง๐ ๐จ๐ฆ๐ฒ๐ž๐ฅ๐ข๐š ๐€๐ฎ๐ฌ๐ญ๐ซ๐š๐ฅ๐ข๐š www.chiariaustralia.org                                  ...
30/09/2023

๐Š๐ž๐ž๐ฉ ๐…๐ข๐ ๐ก๐ญ๐ข๐ง๐  ๐Ÿ๐จ๐ซ ๐€๐ฐ๐š๐ซ๐ž๐ง๐ž๐ฌ๐ฌ
๐‚๐ก๐ข๐š๐ซ๐ข ๐š๐ง๐ ๐’๐ฒ๐ซ๐ข๐ง๐ ๐จ๐ฆ๐ฒ๐ž๐ฅ๐ข๐š ๐€๐ฎ๐ฌ๐ญ๐ซ๐š๐ฅ๐ข๐š
www.chiariaustralia.org

29/09/2023

๐ˆ ๐ฐ๐ข๐ฌ๐ก ๐ˆ ๐ค๐ง๐ž๐ฐโ€ฆ.?

What are some things you wish you knew sooner that newly diagnosed people can learn from?

๐‚๐ก๐ข๐š๐ซ๐ข ๐š๐ง๐ ๐’๐ฒ๐ซ๐ข๐ง๐ ๐จ๐ฆ๐ฒ๐ž๐ฅ๐ข๐š ๐€๐ฎ๐ฌ๐ญ๐ซ๐š๐ฅ๐ข๐š
www.chiariaustralia.org

28/09/2023

Fast MRI Scan May Eliminate Need for Sedation

Sleep Week and ChiariItโ€™s currently sleep week right now and sleep issues can be caused by Chiari and generally from chr...
28/09/2023

Sleep Week and Chiari
Itโ€™s currently sleep week right now and sleep issues can be caused by Chiari and generally from chronic illness. One of the big sleep issues associated with Chiari is Central Sleep Apnoea - while itโ€™s not seen it a high majority of patients itโ€™s usually a sign of brainstem compression and a red flag to move forward with surgery.

Getting a sleep test in Australia requires a referral from your GP either to a sleep doctor or directly to a sleep lab. You can get sleep tests in many public and private hospitals but itโ€™s best to avoid small home studies from chemists and get a proper full sleep study from a place with certified sleep technicians and sleep doctors in.

www.chiariaustralia.org

๐Š๐ง๐จ๐ฐ๐ข๐ง๐  ๐ข๐ฌ ๐ง๐จ๐ญ ๐„๐ง๐จ๐ฎ๐ ๐ก  We are desperate for more research - awareness is great but we need more than people just knowing...
28/09/2023

๐Š๐ง๐จ๐ฐ๐ข๐ง๐  ๐ข๐ฌ ๐ง๐จ๐ญ ๐„๐ง๐จ๐ฎ๐ ๐ก
We are desperate for more research - awareness is great but we need more than people just knowing the name. Thatโ€™s the first step is getting itโ€™s name out and we can only do that with your help.

Like, comment and share!
๐‚๐ก๐ข๐š๐ซ๐ข ๐š๐ง๐ ๐’๐ฒ๐ซ๐ข๐ง๐ ๐จ๐ฆ๐ฒ๐ž๐ฅ๐ข๐š ๐€๐ฎ๐ฌ๐ญ๐ซ๐š๐ฅ๐ข๐š
www.chiariaustralia.org

๐Œ๐š๐ค๐ž ๐‚๐ก๐ข๐š๐ซ๐ข ๐•๐ข๐ฌ๐ข๐›๐ฅ๐ž Help make the invisible become visible by liking, sharing and commenting so our condition gets out t...
27/09/2023

๐Œ๐š๐ค๐ž ๐‚๐ก๐ข๐š๐ซ๐ข ๐•๐ข๐ฌ๐ข๐›๐ฅ๐ž
Help make the invisible become visible by liking, sharing and commenting so our condition gets out there for people to see.

๐‚๐ก๐ข๐š๐ซ๐ข ๐š๐ง๐ ๐’๐ฒ๐ซ๐ข๐ง๐ ๐จ๐ฆ๐ฒ๐ž๐ฅ๐ข๐š ๐€๐ฎ๐ฌ๐ญ๐ซ๐š๐ฅ๐ข๐š
www.chiariaustralia.org

27/09/2023

Today is an exciting day, as we welcome Qantas and Jetstar as our new members. Qantas and Jetstar are committed to enhancing the customer journey with staff ready to recognise and support Sunflower wearers and their carers to ensure they have a wonderful experience traveling.


๐‚๐ก๐ข๐š๐ซ๐ข ๐’๐ญ๐ซ๐จ๐ง๐  ๐“๐จ๐ ๐ž๐ญ๐ก๐ž๐ซ Itโ€™s only together we can get awareness going - please like, comment and share! ๐‚๐ก๐ข๐š๐ซ๐ข ๐š๐ง๐ ๐’๐ฒ๐ซ๐ข๐ง๐ ...
26/09/2023

๐‚๐ก๐ข๐š๐ซ๐ข ๐’๐ญ๐ซ๐จ๐ง๐  ๐“๐จ๐ ๐ž๐ญ๐ก๐ž๐ซ
Itโ€™s only together we can get awareness going - please like, comment and share!

๐‚๐ก๐ข๐š๐ซ๐ข ๐š๐ง๐ ๐’๐ฒ๐ซ๐ข๐ง๐ ๐จ๐ฆ๐ฒ๐ž๐ฅ๐ข๐š ๐€๐ฎ๐ฌ๐ญ๐ซ๐š๐ฅ๐ข๐š
www.chiariaustralia.org

๐Ÿ’œ ๐Ÿ’ช ๐Ÿง ๐Ÿ’ช๐Ÿฝ

Address

Brisbane, QLD
4000

Alerts

Be the first to know and let us send you an email when Chiari and Syringomyelia Australia posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Business

Send a message to Chiari and Syringomyelia Australia:

Videos

Share