Leslie Massey
Motor Neurone Disease (MND) is a neurodegenerative disease that affects the nerves that communicate between the brain and muscles. MND is uncommon but not rare, and recent statistics estimate that there are over 2,000 people in Australia currently diagnosed with MND. Every day, two people are diagnosed with MND and two people die from the disease. The lifetime risk of MND is about 1 in 300 by the age of 85.
| Characteristics | Values |
|---|---|
| Number of people in Australia diagnosed with MND | Over 2,000 |
| Number of new diagnoses per day | 2 |
| Average age of onset | 50 |
| Lifetime risk by the age of 85 | 1 in 300 |
| Gender distribution | Slightly more men than women |
| Age distribution | Around half under 60 |
| Treatment | Coordinated multidisciplinary care and timely access to interventions |
| Neuroprotective therapies | 2 available, with modest effects |
| MND South Australia | 114 patients alive on 31 December 2019 |
| MND South Australia estimated prevalence | 6.79 per 100,000 persons |
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What You'll Learn
MND diagnosis and prevalence in Australia
Motor neurone disease (MND) is a neurodegenerative disease that affects the nerves that communicate between the brain and muscles. It is characterised by the degeneration and death of nerve cells (neurons) that control muscles, leading to increasing muscular weakness and disability. While MND is uncommon, it is not considered rare. The average age of onset is around 50 years, and it affects slightly more men than women.
In Australia, it is estimated that over 2,000 people are currently diagnosed with MND, with around 2,752 Australians living with the disease at any given time. Every day, approximately two new cases of MND are diagnosed in Australia, and sadly, two people die from the disease. The lifetime risk of developing MND in Australia is about 1 in 300 by the age of 85, and this risk increases with age.
The prevalence of MND in South Australia was found to be higher than the global estimates in a study conducted between 2017 and 2019. The estimated prevalence was 6.79 per 100,000 persons, with a crude incidence rate of 3.34 per 100,000 person-years. The Global Burden of Disease (GBD) project estimated a lower global prevalence of 4.5 per 100,000 persons and an incidence of 0.78 per 100,000 person-years.
MND Australia and other organisations provide resources, information, and support for people living with MND, their caregivers, and families. They also advocate for improved care and support for those impacted by the disease. Additionally, MND Australia funds research to better understand the causes, improve treatments, and ultimately find a cure for MND. There are currently over 80 clinical trials related to MND being conducted worldwide, with several taking place in Australia.
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MND symptoms and treatment
Motor neurone disease (MND) is a progressive disease that affects the nerves that communicate between the brain and muscles. It causes increasing disability due to muscular weakness, generally without mental impairment or incontinence. The symptoms and progression of MND vary from person to person, and it can affect people of any age, although it is more common in those over 50. Early symptoms of MND can include muscle wasting, muscle weakness, muscle twitching, difficulty swallowing and speaking, muscle cramps, and spasms. In some cases, symptoms may be widespread from the start, but in most instances, the disease starts in a localized fashion and becomes more generalized as it progresses.
While there is currently no cure for MND, treatments are available to help manage symptoms and improve quality of life. These treatments include medications such as riluzole, which can slow down the progression of ALS, and multidisciplinary care from a team of healthcare professionals, including specialists such as neurologists, physiotherapists, occupational therapists, speech pathologists, and psychologists. Additionally, gene mutation-targeting strategies are being explored to develop treatments for ALS, SMA, and other genetic causes of MND.
As MND progresses, individuals may experience difficulty moving and require a wheelchair. They may also need a ventilator to assist with breathing and assistive technology for speech. The care team will work with the patient to provide the necessary support and treatments to maintain their independence and quality of life.
It is important to note that MND can be difficult to diagnose in the early stages, and a firm diagnosis may rely on observing the progression of symptoms. If you are experiencing any potential early symptoms of MND, it is recommended to consult a healthcare professional for guidance and support.
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MND research and cure
Motor neurone disease (MND) is a neurodegenerative disease that affects the nerves that communicate between the brain and muscles. Currently, there is no cure or prevention for MND. However, there are treatments available to reduce symptoms and improve the quality of life for those with the disease.
MND Australia's research grants program supports high-quality MND research to discover the causes, improve care, and find treatments and, ultimately, a cure for MND. The MiNDAus Partnership aims to improve the standard and coordination of care for people living with MND in Australia and to enhance the prospects of discovering a cure or treatment. MND Australia also provides resources, information, and service linkage for people living with MND, their carers, and families.
There are currently over 80 ALS/MND clinical trials being conducted worldwide, with information on those being conducted in Australia available on the Clinical Trial page of the Australian New Zealand Clinical Trials Registry website. The MND Decision Support Tool is another resource designed to help people with MND discuss their choices with their doctors or genetic counsellors.
The mainstay of treatment for people living with MND is coordinated multidisciplinary care and timely access to interventions to manage symptoms. Only two neuroprotective therapies are currently available, with modest effects on the course of the disease. Riluzole, an anti-glutamate medication, is available in Australia at a subsidised price for eligible people. Edaravone (radicava) has been shown to provide limited improvement in survival in a small subset of people with ALS/MND, but it has not been approved by the Therapeutics Goods Administration (TGA) in Australia.
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MND support and resources
Motor Neurone Disease (MND) is a slowly progressive disease that affects the nerves that communicate between the brain and muscles. It causes increasing disability due to muscular weakness, and early symptoms include muscle wasting, muscle weakness, and slurred speech. Every day in Australia, two people are diagnosed with MND and two people die from the disease. It is estimated that around 2,000 to 2,752 Australians are living with MND at any one time.
MND Australia is the national peak body supporting people impacted by MND. They provide resources, information, and service linkage for people living with MND, their carers, families, friends, and healthcare professionals. MND Australia also has a research arm, MND Research Australia, which awarded almost $3 million for new MND research projects in 2021.
State MND Associations provide support for people living with MND, their families, and carers. These associations are located in New South Wales, Queensland, South Australia, Tasmania, Victoria, Western Australia, and the Australian Capital Territory (ACT) and Northern Territory.
MND Connect is another resource that provides information and support for people living with MND, as well as health professionals and service providers. They also have a research grants program to improve care and find treatments for MND.
In addition to these national and state-based resources, there are also various research papers, personal stories, and updates on the latest news and developments in MND available online.
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MND risk factors
Motor neurone disease (MND) is uncommon but not rare in Australia, with recent statistics estimating that over 2,000 people in the country currently have the condition. MND is a slowly progressive disease that affects the nerves that control the muscles, causing them to degenerate and die. While the specific causes of MND are not fully understood, several risk factors have been identified:
Genetic Factors
Genetics are believed to play a role in MND, with about 10% of cases being hereditary. Individuals with a family history of the disease are at a higher risk of developing it themselves. Certain genetic mutations have been linked to MND, and specific genes have been identified as disease-causing variants.
Environmental Factors
In addition to genetic factors, environmental exposures are also thought to contribute to the development of MND. These include heavy metals such as lead and mercury, chemicals like pesticides and solvents, electric shock, physical injury, and smoking. Agricultural tasks and certain industries may increase exposure to these risk factors.
Other Factors
Other factors with weaker evidence include participation in professional sports, lower body mass index, lower educational attainment, manual occupations, military service, exposure to Beta-N-methylamino-L-alanine (BMAA), and viral infections. Personality traits such as openness, agreeableness, and conscientiousness are also common among patients with MND, but it is unclear if these traits directly increase susceptibility or are a result of genetic factors.
While the exact causes and risk factors for MND are still being investigated, it is clear that a combination of genetic, environmental, and other factors contribute to the development of this rare and debilitating disease.
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Frequently asked questions
Recent statistics estimate that there are over 2,000 people in Australia currently diagnosed with MND.
Every day, two people are diagnosed with MND in Australia.
Every day, two people die from MND in Australia.
The lifetime risk of MND for Australians is about 1 in 300 by the age of 85.
