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General News

12 June, 2024

Ice, like MND, takes their breath away

More than 2300 Australians are thought to be living with a disease which affects people from every country and of every ethnicity - yet its cause remains a mystery.

By Samantha Smith

Grace Phelan and Stef Newton draw courage from each other while Moira Fulton tries to hide as raffle winners pour buckets of ice water over the 'volunteers'. With assistance from the Southern Mallee Thunder, who held their own Big Freeze event the next day, students raised $5313 to fight MND.
Grace Phelan and Stef Newton draw courage from each other while Moira Fulton tries to hide as raffle winners pour buckets of ice water over the 'volunteers'. With assistance from the Southern Mallee Thunder, who held their own Big Freeze event the next day, students raised $5313 to fight MND.

There is no cure for this disease, which becomes progressively worse, stealing a loved one's ability to walk, talk, laugh, smile and, eventually, breathe.

Research has shown that it is more common in people over 50, and that the risk grows as people get older.

The lifetime risk of developing this disease is about 1 in 300 by the age of 85. However, almost half of those diagnosed are under 60. Men are more likely to be diagnosed than women.

Every day two more Australians are diagnosed with Motor Neuron Disease (MND) - and every day two Australians die from it. There is no cure.

MND refers to a group of diseases that damage specific nerve cells called motor neurons, preventing them from carrying messages from the brain to the muscles that control walking, talking, eating and breathing.

The patterns and progression of symptoms can vary, depending on which motor neurons are affected first, but the general signs remain the same: a spreading weakness in the limbs which grows worse over time.

Early signs of MND can be mild and easily passed off as clumsiness, but include stumbling due to weakness in the legs or feet, dropping things due to weakness in the arms or hands, and slurring of speech or trouble swallowing due to weakness in the tongue or throat muscles.

Over time, as the disease progresses, the damaged neurons die and the affected muscles weaken and waste away.

The average life expectancy for a patient with MND is two or three years from diagnosis, but coordinated care between health providers and services can help people with MND cope better in the time they have left.

There is no single test for MND, and diagnosis can be a lengthy process, often several months to a year.

GPs and neurologists will study changes in a patient’s condition over time, and rule out other conditions that begin with similar symptoms.

In the majority of cases the cause of MND is unknown.

The current theory is that there are a range of factors which may act individually or in combination to cause MND.

These factors include exposure to toxins and chemicals in the environment, viral infection, immune-related damage, premature ageing of motor neurons, and genetic factors.

Researchers can also test for gene mutations that may increase the likelihood of people developing MND, especially if there is a family history of the disease.

But, they warn, even in cases when there is a family link, the age of presentation, location of symptoms, and progression of the disease will still differ from person to person.

Some family members who carry the “faulty” gene may never develop MND, leading scientists to believe there are a series of events that need to interact with the faulty gene to set off the disease process.

Some people with a family history of MND may be interested in genetic testing. If so, talk to your doctor - they can refer you to a genetic counselling service.

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