ADVISORY BOARD APPROVED BROCHURES  
PROVIDED & WRITTEN BY DNA Inc.
                                                              

                                                                                                                    

 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 information 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.

   

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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, 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

           

What is Dystonia:

Dystonia is a neurological movement disorder that makes it difficult for people to control their muscles. It can cause abnormal twisting or positions in part(s) of the body along with spasms or tremors. In some people the postures may be fixed or locked in position and in others they can occur from time to time. In some types of dystonia pain can be the main symptom. Dystonia can affect almost any part of the body.

Dystonia affects children and adults of any age and has many different causes. In some people symptoms may improve or even disappear. However, the symptoms may return after a period of time. There is no known cure but there are treatments that help with the symptoms.

There are many forms of dystonia and many conditions or diseases may include dystonia as part of the symptoms.

What causes dystonia?

Dystonia has many causes. It may be genetic as in early-onset generalised dystonia, dopa-responsive dystonia and myoclonus dystonia. It can also be acquired (where there is a known cause), from a brain injury as in hemidystonia or cerebral palsy, from certain medications that affect the brain or as a result of stroke or trauma. However, often the cause of dystonia is not known (this is called idiopathic dystonia).

Where a cause is not found it is usually accepted that there is a problem with the way certain areas of the brain, such as the basal ganglia and the cerebellum, control movement.

Common types of dystonia

Dystonia can be described as focal, where only one area of the body is affected, segmental, two or more connected areas are affected, hemidystonia, one side of the body only is affected, multifocal where two or more unconnected body regions are affected and generalised, where most or all of the body is affected.

Focal dystonias can occur at any age but mostly occur in adults. They include:

  • cervical dystonia – dystonia of the neck causing painful spasms, postures or positions
  • blepharospasm – dystonia of the eyelids causing the eyes to blink or close often
  • spasmodic dysphonia – dystonia of the larynx or voice box leading to strained, whispering or shaky speech
  • writer’s or musician’s cramp – causing difficulty with writing or playing a musical instrument
  • generalised dystonia – where the trunk and at least two other parts of the body are involved
  • oromandibular dystonia – dystonia of the face, jaw, mouth and tongue with difficulty in opening or closing the mouth affecting chewing and speech and causing movements the person cannot control

Segmental dystonias include Meige’s syndrome which is mostly a mix of two forms of dystonia, blepharospasm and oromandibular dystonia, that could also involve the voice, or combinations such as writer’s cramp and cervical dystonia.

Hemidystonia affects one side of the body. This type of dystonia is usually caused by some type of injury to the  brain.

Multifocal dystonia is not common, where unconnected areas in the body are affected, for example, spasmodic dysphonia may be seen with writer’s cramp.

Generalised dystonia is the least common form of dystonia but the most disabling and occurs mostly in children and adolescents (13-19 year olds). In this type of dystonia the trunk (central or main part of the body) is involved and two or more other areas of the body. The following types of generalised dystonia are the most common. Please refer to our website for more information.

  • Early-onset generalised dystonia. Symptoms start in childhood or adolescence (13-19 years old) and often begin with dystonia of a leg but spread to other areas.
  • Dopa-responsive dystonia is a dystonia that responds well to dopamine, an important chemical messenger in the brain.
  • Myoclonus dystonia where quick, jerky movements of mostly the arms are seen in association with dystonia.

How is dystonia diagnosed?

A specialist neurologist (a neurologist with a special interest in Movement Disorders) will assess the symptoms, perform a neurological examination and take a detailed history for a possible diagnosis of dystonia.

What treatments are available?

Treatments depend on the type of dystonia and include medications, botulinum toxin and surgery. For further information refer to treatment options. Dystonia can affect the individual physically, emotionally, socially, at work and in daily living activities. It often causes depression and anxiety. These health symptoms can have as big an impact as the physical symptoms and should be discussed with your neurologist, GP or mental health professional.

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Disclaimer: The information contained on this page is of a general nature only. Please consult a Movement Disorders specialist or neurologist if you have specific questions regarding your condition.

 

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.