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Dystonia - "Muscles behaving badly"

- Lily (aged 7)

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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  5th – 12th September 2020 Incl.

                                                                                                                                                                                         Dystonia Network of Australia Inc. (DNA)  is pleased to announce   The Australian Dystonia Awareness Week on the Government Calendar for 2020 is 5th – 12th September inclusive. We are indebted to Grainger films who decided to professionally  produce the dystonia awareness radio ad for us pro-bono.  Stay tuned to our press release  and news stories pages on our web site for updates. For more information you can also email us  mailto:info@dystonia.org.au

 

 

                                                                                      Zoom Webinar on Deep Brain Stimulation (DBS) & Dystonia

Dear All,

Dystonia Network of Australia Inc. has the pleasure of announcing a zoom webinar on

Topic: Deep Brain Stimulation (DBS) & Dystonia

Speaker: Dr Julian Rodrigues, Movement Disorder Specialist (DNA Advisory Board)

Time: Friday 11th September, 2020  Canberra, Melbourne, Tasmania & Sydney 07.00pm.  Adelaide 06.30pm.  Perth. 05.00pm.

Please email us at info@dystonia.org.au for the zoom invitation.

Australian Dystonia Awareness Week 2020 The Hills Radio Interview Adelaide 

Adelaide Hills Radio as well as some other country radio stations have been running our ad for dystonia awareness week. Chris Carpenter,  General Manager of Adelaide Hills Radio, interviewed Kerrie & I last Thursday 3rd September 2020 about Dystonia and DNA. We won’t be giving up our day jobs any time soon but it went pretty well except for a couple of audio glitches.
With Permission of  The Hills Radio Adelaide.

 

DNA Australian Dystonia Awareness Week 0.30 sec.  Radio Ad

 

AUSTRALIAN DYSTONIA AWARENESS WEEK  5-12  SEPTEMBER 2020

Dear all,

For those of you who haven’t heard this, here is a link to Dr Alex Lehn’s talk and Q&A in 2018 on Functional Neurological Disorders (FND), an umbrella term which includes functional (psychogenic) dystonia.  It’s quite long but really interesting. Alex Lehn is a neurologist in Queensland and an expert in FND. His ideas on understanding and treatment of this perplexing condition have influenced the care of people with this diagnosis. He also refers to a book, written by a nurse, that would be good for those of the members that are health professionals and the book has free access.

As with any youtube podcast you may have to get rid of an ad every now and then, and we would advise using ear phones or having your computer audio at high as Dr Lehn has a soft voice but it is a very worthwhile broadcast with lots of good Q&As in the second part.

Dear All, today is the beginning of Dystonia Awareness Week. We have placed the link below for the Health Report on dystonia that the ABC aired last year during the 2019 Dystonia Awareness Week. It’s an excellent broadcast. Our thanks to Jake Morcam for contacting us prior to making this documentary and to his sensitivity, empathy and investigative skills.

Up to and during this week we are sending out packages with information on dystonia to neurologists and allied health. Can we ask you to spread the word about “What is Dystonia?” to at least one person every day of this week?  Let us know how you go.

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, Associate Professor 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

 

                                                      

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. 

 https://www.healthdirect.gov.au/australian-health-services/23030054/dystonia-network-of-australia/services/leura-2780-denman  

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.   https://www.cc-dr.org/networks/apon/   &   https://www.cc-dr.org/networks/apon/aponmembers/

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.

 

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