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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 Month  1st – 30th September 2021 Inclusive.                                                                                                                                                               

           Dystonia Network of Australia Inc. (DNA)  

Dear all, please celebrate Dystonia Awareness Month with us. We will not be letting our lockdown dampen our spirits. We have three new webinars for this month:
Dr Tjrk Lagrand, who is currently working with Dr Alex Lehn will be presenting Functional Neurological Disorders, including Functional Dystonia. This presentation is now on the DNA You Tube Channel. https://www.youtube.com/watch?v=t0xZtbDaLuY
Melanie Boyce, PhD candidate and senior neurological physiotherapist will be presenting her research into Dystonia. This presentation is now on the DNA You Tube Channel. https://www.youtube.com/watch?v=Q0ED7RCgjF4
Dr Florence Chang will present Musicians’ and Forearm Dystonia. This presentation is now on the DNA You Tube Channel. https://www.youtube.com/watch?v=bIgvkh8oBvI
We will send invitations and more information soon. Don’t worry if you can’t make it as there will be recordings that we will send out.
As we do every year in September, we will be sending packs of brochures out to neurologists in all states so that patients can access them. Please let us know if you would like a pack sent to your specialist.
The amazing colleagues of one of our Victorian members have arranged, a morning tea, plant sale and a virtual Walkathon to celebrate Awareness month. If you would like to participate in this event and read a little of  Wendy’s story and the fantastic activities her colleagues are achieving for Wendy and Dystonia Awareness. Click on the link below.
We have attached a revised awareness snap and ask that you consider spreading it this month on social media.
As always, we are happy to send brochures and DNA tools if you are able to visit community centres and doctors’ surgeries.

for more infomation go to our: Press Release and News Stories pages on our web site www.dystonia.org.au or you can Email us mailto:info@dystonia.org.au

Hope you are all coping as well as you can during lockdown. Keep safe.

Many thanks & warm Regards,                                                                                                                                                                Kerrie, Laraine & the DNA Committee.

23/09/2021                                                                                                                                                                               Dear All,

As part of Dystonia Awareness Month, DNA was asked to participate in a podcast with The Advocate to raise awareness of dystonia and our activities. The Advocate is an online media service which is dedicated to promoting the activities of not-for-profit organisations and charities. Our Vice-President Denise Duclos was interviewed by podcast producer Carla Wijaya about Dystonia, DNA and supporting people with Dystonia. 
The link is attached if you’d like to listen to the podcast. There are two interviews and the Dystonia interview is the second. It starts at about 13 minutes. 

Our deepest appreciation to the Advocate                                                                                                                                                       Kerrie, Laraine and the DNA Committee.

 

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

 

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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