Movement disorders, including #dystonia and parkinsonism, are a diverse group of diseases, often with varied and overlapping symptoms. These disorders can be acquired or inherited, with numerous genes identified, making diagnosis a challenge. A consortium of French researchers has devised a tool to help clinicians diagnose complex movement disorders. The research group created a 127-gene panel and tested it in 380 patients with suspected movement disorders. The panel had a diagnostic yield of 22%, which is in accordance with other targeted genetic testing for neurological disorders. Read more here ⇒ https://bit.ly/2zV4naY
The Australian Dystonia Support Group has come a long way!
The Australian Dystonia Support Group (ADSG) was formed in 2011 by Lee Pagan who has Adult Onset Generalised Dystonia which affects many muscles throughout the face and body.
During my search for information, support and understanding, I discovered Dystonia websites and support groups. As I read about the devastation faced by many of the contributors, I realised that more support was needed in Australia, so the Australian Dystonia Support Group was created. Each day, I connect with people who cannot imagine living another day, suffering as they do, or others who are desperately trying to hold onto their previous existences and then having to face the grief of losing the life they once had. I sympathise and empathise with them, as I often find myself wondering how I will continue to wake each morning, knowing that life as I knew it has gone, and that my life will always involve this debilitating condition. There is no cure! I can only hope for a treatment that will give me a reasonable quality of life. Source: Lee Pagan’s Story → ‘Trapped’
Since then the group has grown from 4 people to approximately 700 people, now has another 3 admins who volunteer their time to run the group and also has expanded to include a website, Community Facebook and twitter page. In addition to this we:
→ Provide a closed online support group where members can share their experiences while offering a connection to others who live with similar challenges
→ Support gatherings as well as Dystonia information sessions or seminars
→ Provide Information relating to Dystonia and updates by other networks and contacts
→ Communicate with researchers in relation to Dystonia clinical trials which is then shared with members
→ Share flyers, posters and other publications to members, the community and clinics
→ Educate or raise awareness relating to Dystonia, including a yearly Dystonia Awareness Month in September
→ Necessary feedback is provided to networks and contacts to help them understand what is important to people with Dystonia and their families
The Group has come a long way with increasing community or public awareness, providing wonderful support to other Dystonia sufferers and also being in touch with Organisations, networks and researchers.
Congratulations Lee Pagan on an amazing achievement!
There was an abundance of information and events that related to Dystonia in the last 3 months. Here is what you may have missed!
Rare Disease Day – To raise awareness for rare diseases and their impact on the lives of patients and families
Harik, who is part of the ADSG Admin team participated in the 24 hour global challenge #Mark2Curathon to raise awareness for all rare conditions including NGLY-1 deficiency. The challenge was to identify key terms, including genes, diseases, and drugs in all biomedical research which will help the researchers or scientists. Link: Dystonia and Raising Awareness!
Despite having some limitations due to Dystonia she unbelievably made it to top 5! https://mark2cure.org/blog/citsciblitz-update/
Swallowing Awareness Day – Swallowing is Ageless and What’s this thing called Dysphagia?
Brain Awareness Week – To increase public awareness of the progress and benefits of brain research
The Royal Children’s Hospital, Melbourne – Good Friday Appeal
Voice Awareness Month – A time to recognise and support people with voice disorders!
World Voice Day – To Cherish your Voice!
Word Voice day link ⇒ NSDA Videos
Dystonia Europe 25th Anniversary Conference
Other Conference Presentations ⇒ Dystonia Europe YouTube Videos
FND Awareness Day – To raise awareness for Functional Neurological Disorder
Other FND Awareness Day Links ⇒ FND Hope YouTube Videos
World Parkinson’s Day – UniteForParkinsons
Visit our ‘Events’ page for more!
Join in to raise awareness, support research into the early diagnosis and management of voice disorders and to appreciate how important it is for everyone’s voice to be heard!
Did you know that laryngeal dystonia or spasmodic dysphonia is also known as a Voice Disorder?
It is a type of Dystonia (Neurological Movement Disorder), where spasms are experienced in the muscles of the larynx (voice box) that cause the voice to sound tight, strained or hoarse. It can affect speech or voice and make it difficult to communicate. Link to more info → Types of Dystonia
It’s that time of year again. The time that we encourage people to pause for a moment and spare a thought for the phenomenon that is voice! Those tiny little vocal folds work so hard for us from the time we are born until the time we die – without any accolades or thanks… they really are the ‘unsung hero’, so April is THEIR month.For most people – voice comes naturally. They are able to communicate with little or no effort or thought (perhaps on occasion, a little more thought would be useful ), but for some of us it’s an hour by hour (or sentence by sentence) struggle.The month of April is OUR opportunity to share our stories and to help people understand that voice does not come easily for everyone all the time. Read more here → APRIL 2018 is voice awareness month – Australian Dysphonia Network
Around one million Australians have a swallowing difficulty. Swallowing problems can occur at any stage of life. However, the knowledge of dysphagia and its implications remain largely unknown for most Australians. Source: Speech Pathology Australia.
Did you know that Dystonia can affect swallowing?
Dystonia is a neurological movement condition that can affect any part of the body and causes muscles to contract or spasm. Depending on the type of Dystonia it can cause swallowing difficulties. Link to types: https://wp.me/P57Axa-1I
Have you seen this article? A serious and often overlooked issue for patients with brain diseases: Swallowing. Link: http://bit.ly/2DpHLfe
Swallowing Awareness Day Resources: http://bit.ly/2na1NlZ
#dysphagia #900swallows #dystonia
Brain Awareness Week (BAW – 12-18 March 2018) is the global campaign to increase public awareness of the progress and benefits of brain research.
Dystonia is a neurological movement disorder which can appear in adults and children. It can affect any part of the body and causes muscles to contract or spasm, resulting in tremors, twisting and other uncontrollable movements.
It is important to support Brain or Dystonia research to gain a better understanding, so can aim for more effective technologies, treatments or a cure.
To donate to research, a cause or to a project relating to Dystonia click link provided!
→ Donate to Dystonia reasearch or projects
Want to participate in Dystonia research trials or studies? Visit our ‘Dystonia Research’ page.
Brain Awareness Week tips to raise awareness about Dystonia
- Leave Dystonia flyers or posters at a clinic or Hospital
- Share link to website and other Dystonia info on Facebook and twitter
- Share our Dystonia awareness video → Dystonia Awareness Video
- Share our Brain Awareness Week Poster! → Let’s talk about Dystonia
- Share our awareness slide → Dystonia Awarness Slide
What is Dystonia? → Dystonia
Brain Foundation → Big Trivia
Visit the Brain Awareness Week site for updates and events!
Hastags: #Dystonia #Dystoniaawareness #brainweek
The Queensland Brain Institute at the The University of Queensland is hosting an information session for patients and carers living with Parkinson’s Disease, #Dystonia, Essential Tremor and Tourette’s Syndrome.
When: Saturday 10 March 2018 at 9am – 1pm
Where: Toowoomba Sports Ground, 47 Arthur Street, Toowoomba, QLD 4350
RSVP: By 8 March 2018
As a light lunch will be provided for catering purposes please RSVP by completing the registration form at the following link and clicking on the ‘Register’ button.
On 28 February 2018 it is Rare Disease Day to raise awareness for rare diseases and their impact on the lives of patients and families.
It is also an opportunity for participants to be part of a global call on policy makers, researchers, companies and healthcare professionals to increasingly and more effectively involve patients in rare disease research.
Did you know there are some forms of Dystonia that are rare?
Dystonia is a neurological movement condition which affects adults and children and is often not well known. It can affect any part of the body and causes muscles to contract or spasm. Pain, tremors, twisting and other uncontrollable movements can be experienced. Symptoms may be due to the Basal Ganglia or other areas of the brain that control movement. Neurotransmitters may send signals to muscles to cause them to be overactive.
Even though Dystonia can be known as idiopathic or primary Dystonia, it may also be genetic or result from other health conditions such as stroke, other diseases, physical trauma, or as a side effect to certain medications. There are different types of Dystonia and some are rare, such as Dopa-responsive dystonia (DRD), which usually appears in childhood or adolescence with difficulty in walking.
Visit Ophranet to search for more rare forms of Dystonia and other rare conditions. Link: Ophranet Portal
Rare Disease Day 2018 and #CitSciMedBlitz!
Harik, who is part of the ADSG Admin team, volunteers her time despite living with Cervical Dystonia, to support people with all forms of Dystonia, including the genetic and rare forms.
She will be participating in the 24 hour challenge #Mark2Curathon to raise awareness for all rare conditions including NGLY-1 deficiency.
The challenge would be to identify key terms, including genes, diseases, and drugs in all biomedical research which will help the researchers or scientists.
It would be a big achievement in just participating as the condition affects her neck, causes muscle spasms as well other symptoms, and will make it difficult to even attempt the challenge, but she is willing to give it her best to raise awareness for all rare diseases!
Get on board! Raise awareness and support rare disease research!
#Dystonia #ShowYourRare #MyRare #RareDiseaseDay
From 1 February 2018 medicines containing codeine are no longer available without a prescription.
Products containing codeine derivatives, pholcodine, dextromethorphan, and dihydrocodeine are unaffected by the changes.
Please refer to the following link with a list of products affected.
For further details click link: Therapeutic Goods Administration (TGA) – Codeine information hub
Codeine is an opioid drug and often used for pain relief. If you will be affected by these changes or experiencing ongoing pain, please speak to your GP or a health professional about pain management.
Links to more information, advice or support
NPS MedicineWise – Medicines with codeine – what you need to know
Pharmacy Guild of Australia – Ask your pharmacist about managing pain Consumer Flyer
Chronic Pain Australia – Chronic Pain Information
Australian Pain Management Association (APMA) – Pain Link telephone helpline 1300 340 357
The Australian Pain Society (APS) – Pain Management Clinics or Programs National Directory
Pain Australia – Links to National Pain Services and Programs
Pain Management Network – Information and Clinics in NSW
Western Australia – painHEALTH
Do you have Dystonia and need information relating to pain?
Click on the following link to direct you to information about Dystonia and Pain management.
Do you have Dystonia and need support?
The Australian Dystonia Support Group provide support and information to Australians who have Dystonia, their family members, carers and parents of children with Dystonia. if you would like to join our support group click link or Join Our Group button.