Motor Neurone Disease (MND) is the name given to a group of diseases in which the nerve cells (neurones) that control muscles undergo degeneration and die. Amyotrophic Lateral Sclerosis (ALS), Progressive Muscular Atrophy (PMA), Progressive Bulbar Palsy (PBP), and Primary Lateral Sclerosis (PLS) are all subtypes of motor neurone disease.
MND is the widely used generic term in the United Kingdom, Australia, and parts of Europe, while ALS is used more generically in the United States, Canada, and South America.
These diseases are also sometimes known as Maladie de Charcot and are often referred to in the United States as Lou Gehrig’s Disease, after the famous baseball player who died of the disease.
How Does ALS/MND Affect the Body?
By any name, ALS/MND is characterised by progressive degeneration of the motor nerve cells in the brain and spinal cord. The motor cells (neurones) control the muscles that enable us to move around, speak, breathe, and swallow.
With no nerves to activate them, muscles gradually weaken and waste. Symptoms may include muscle weakness and paralysis, as well as impaired speaking, swallowing, and breathing. Progress is generally rapid, with an average life expectancy of between 2 and 5 years from the onset of symptoms.
Though it can affect anyone, ALS/MND is more often found in the 40 to 70 year age group.
How Common Is ALS/MND?
The impact of ALS/MND on the community is usually measured by incidence and prevalence. Incidence is the number of new cases diagnosed during a defined period, usually a year. Prevalence is the number of people living with the disease at a given point in time.
2 per 100,000
Incidence
New cases diagnosed each year
6 per 100,000
Prevalence
People living with ALS/MND
~140,000
New cases worldwide
Approximately each year
Research has found that incidence is higher in people aged over 50 years. Although classified as a rare disease based on its prevalence, ALS/MND is, in fact, quite common. Approximately 140,000 new cases are diagnosed worldwide each year — about 384 every day.
Genetics and ALS/MND
A small proportion of cases (~10%) are familial (inherited), while the majority of cases (~90%) are still considered sporadic or singleton. However, research continues to reveal genetic associations with ALS/MND.
This may mean that many cases currently considered sporadic also have a genetic contribution. Further research is needed to establish the extent to which genetics contributes to causing and/or moderating ALS/MND.
The Alliance believes that all people diagnosed with ALS/MND should have access to genetic counselling and testing if they choose to.
Living with ALS/MND
The disease affects each individual differently and can have a devastating impact on family, carers, and friends. The rapidly progressive nature of the disease requires constant adaptation to increasing and changing levels of disability, which in turn require increased levels of support.
Find Information and Support in Your Region
For information about ALS/MND in other languages, or to connect with an ALS/MND organization in your region, visit our Member Association directory.