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Dystonia - "Muscles behaving badly"

- Lily (aged 7)

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Help promote awareness of dystonia

Life without Music

Dystonia Network of Australia Inc.

Providing a pathway to support, information, literature and community awareness for adults and children living with dystonia and their carers and health providers.

Our aim:

  • To provide appropriate, researched information for adults and children with dystonia, their carers and interested health providers.
  • To increase community awareness of the condition.
  • To ultimately fund seminars and assist with research into dystonia.

Frequently Asked Questions

Australian Dystonia Awareness Week  7th – 14th September 2019 Incl.

Dystonia Network of Australia Inc. (DNA)  is pleased to announce Australia’s Dystonia Awareness Week on the Government Calendar for 2019 is 7th – 14th September inclusive. We are indebted to Grainger films who decided to professionally  produce the dystonia awareness radio ad pro-bono which is now out at radio stations across Australia via Livermore Media. Please let us know if you hear it. We have our awareness days as follows: Royal North Shore Hospital Sydney: Monday 2nd September 2019 in the Main Foyer from 10am – 5pm.  St Vincent’s Hospital Sydney: Wednesday 11th September 2019 on the Mezzanine level from 10am – 5pm. We have chosen these dates to cover the Movement disorder or Botulinum Toxin clinics. If you live nearby come and chat to us or spend some time assisting at the booths. For more information please email us. The GP Education dates, we will have a booth, at Sydney – Saturday 24th August 2019 and Adelaide – 14th September 2019.  Also let us know if you want to do something special to celebrate Dystonia Awareness Week. We are happy to support you. Stay tuned to our  press release  and  news stories  pages on our web site for updates. For more information you can email us mailto:info@dystonia.org.au

DNA Dystonia 0.30 sec.  Radio Ad

9/9/19

ABC Health Report on Dystonia

Dystonia Network of Australia Inc. (DNA) is thrilled to announce as part of the Dystonia Awareness week the segment on the ABC Health Report on Dystonia is now playing. DNA members Robyn and Paul are the patients who are telling their Dystonia stories and our DNA Advisory Board Members Associate Professor Victor Fung MDS Neurologist spoke on Botox and its effective treatment of Dystonia and how it works by altering messages from the brain, Doctor Stephen Tisch MDS Neurologist spoke about Movement Disorders and what they are, he also spoke on new MRI called a DTI which can show Dystonia the gapes in gene research, and how patients with the gene can sometimes have no symptoms and others without the gene can have the symptoms and finally how therapies are sometimes ahead of understanding conditions and Dr Lynley Bradnam Professor of Physiotherapy (NZ) spoke about Dystonia and what it is and different types of the condition also DBS surgery and how in the early days it was thought it was a hysterical condition and advances in imagery Here is the ABC link: https://www.abc.net.au/radionational/programs/healthreport/living-with-the-mental-weight-of-dystonia/11491220

With Permission of                                                                                                                                                                                                                          James Bullen
Producer, Health Report,                                                                                                                                                                                                                                                                       ABC Radio National  Sydney, Australia

 

Australian Dystonia Awareness Week 7th – 14th September                                                                                                                    Denise & Kerrie at Royal North Shore Hospital Sydney:

 

 

Stewart & Margot at the GP Education Day Adelaide 14th Sept. 2019

 

                            

 

 

Can dystonia be caused by stress?

Frequently Asked Questions

Stress does not cause dystonia

But symptoms often get worse in stressful situations. This happens in most movement disorders.

Can dystonia go into remission?

Frequently Asked Questions

A small percentage of people will experience remission

Or a lessening of symptoms of their dystonia but these symptoms often return. 

Is tiredness a part of my dystonia?

Frequently Asked Questions

Many people report tiredness as part of their symptoms.

Tiredness could be due to the energy expended with constant involuntary movements.

 

Dystonia Network of Australia Inc. (DNA) is the National Peak Body for All Types of Dystonia.    

Dystonia Network of Australia Inc. is a member of the newly formed Australian Patient Organisation Network (APON) in May 2019 which has been formed to support the Australian Not-For-Profit Health Charities sector.

We are registered with the  Centre for Community – Driven Research (CCDR) & the lnternational Centre for Community – Driven Research. (ICCDR)

ICD  Classification lnternational  Statistical  Classification  of  Diseases and  Related Health Problems 
(lCD),  a  medical classification list by the World  Health Organisation (WHO). lt contains codes for  diseases,  signs  and symptoms,  abnormal  findings,  complaints,  social circumstances,  and external  causes  of injury or diseases.
Vl Disease of the nervous system.
G20-G26 Extrapyramidal and movement disorders
G24 Dystonia.

Registered Charity ABN:  66 348 949 649  and  Charitable Fundraising No: CNF/23669 with deductible gift recipient (DGR) status 2014, and a Medical and Multidisciplinary Advisory Board. 

                                                                                              Partnered with