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Who we are?

Welcome to Arachnoid Cyst Awareness Australia. Our aim is to provide

Information and Support to Patients who have been diagnosed with this rare

condition.  Also to give Support to their families and Carers.

Hi My name is Leonie Axton – Hooper. I am the Founder and Coordinator of Our Arachnoid Cyst Awareness Australian Support Group.

I am also a patient. You are seeing me on a good part of my day, in the afternoons I’m pretty much out for the count with pain and exhaustion. My story is on our patient stories page but I am not the only patient as you will see and every day on our facebook page and through our mailing lists many more patients and families are coming forward to say they are struggling with finding medical help and care. 

Please I urge you to read our letter to The Hon Greg Hunt and other Major Peak Healthcare Bodies in Australia and also sign our petition below.

Help us to bring about changes to the way  symptomatic Arachnoid Cysts are viewed here in Australia.  

 

You can find us on Facebook:

http://www.facebook.com/groups/acystawareaustsupportgroup/

We want our patients here in Australia to receive proper medical care and an understanding of Arachnoid Cysts and to encourage the medical profession to take on more up to date research, it is hoped we will have medical professionals and others in our society look up this Website.

Please Sign our Petition

https://www.petitions.net/please_help_us_to_receive_better_medical_and_follow_up_care_for_the_treatment_of_arachnoid_cysts.

 

1st April 2022 –  

 

Please help us to receive Better Medical and Follow Up Care for the treatment of Arachnoid Cyst Patients here in Australia

 

ACAA Support Group Letter to The Hon Greg Hunt Minister for Health, The Healthcare Complaints Commissioner,The Aust Gov Dept Health and The Aust Commission on Saftey and Quality and Healthcare.

Press on heading to download

Update! –

As of the 6th April 2023, an updated letter was sent to The Hon Mark Buttler. We have had a  response.

In the letter we received, we were told about Rare Voices Australia.

 

Rare Voices Australia is the peak body for Australian’s living with rare diseases here in Australia. 

I was asked if we would like to contact Rare Voices Australia and organize for our organization to be added to the Rare Diseases Directory.

I have made contact with Rare Voices and we are now on the Rare Diseases Directory for Australia. 

I will be organizing for us to become a partner of Rare Voices Australia.

 

I urge and encourage you to please post of your diagnoses, symptoms and your journey of your care. It is important you add whether or not you are receiving the correct support and treatment as we know many of you are having huge struggles to get Drs to listen to our required needs and services.

By doing this it will help us all to receive better care and understanding as there is evidence that we need the same care and understanding and dignity as others with other debilitating neurological symptoms.

The more Patients shown to be needing help and support will hopefully show the medical community we are needing help desperately.

Thankyou!

 

TO POST A STORY – you need to go to LOGIN/SIGNUP

Fill in your details and press Log In.

You will receive an email with a long computer generated pass word. ( This is for security reasons.)

Use that password to log in.

TO CHANGE THE PASSWORD to your own password you scroll down to change password. Put in your own password and press update password.

It will tell you if your password is successful, then go to the front of site, click on the options box for homepage.

Then scroll down to Post a Story.

If you are an Existing User and have forgot your password, you can press change password and generate a new password.

 

We would like to show you, because of our numbers so far, that we are only a small and personal Support organization with the admin staff of 1.5, myself and Carer. We thought we would show you our Hub that we work very hard from!

As they say “From little things big things grow” ref ( our own Australian Musician and Artist Paul Kelly!)

Our Patient numbers are growing each day. Many of our patients on social media and through our mailing lists are all looking for information and support to find out more about this condition. 

It is hoped from eventual funding we can broaden our support network and raise more help and awareness of this condition here in Australia.

Above is our Australian Arachnoid Cyst Support Group hub that we work really hard from to help all our Arachnoid Cyst Patients and there families. Along the way Leonie has connected with some wonderful, positive patients and their families, we wish to thank all our patients for sharing their stories and also adding input to the design processes for our Support Group, model and logos to help with our marketing to advocate and create awareness for our cause.

The Information on this site is intended as a guide and support only and has been produced from the experiences of Patients with symptomatic Arachnoid Cysts and their Families and Carers. It is not intended to replace correct medical treatment and information on Arachnoid Cysts. For accurate information, please consult your own medical Professionals.