The ice bucket challenge has brought motor neurone disease, a rare disease of the nervous system, to public attention.

The ice-bucket challenge to raise money for ALS research has been all over the media. If you’ve been following, you may well have wondered what exactly ALS is. We’ve a quick briefing to help you.

What is ALS?

ALS - or amyotrophic lateral sclerosis - is the most common form of motor neurone disease (MND)

What is MND?

MND is a rare condition which affects the nervous system. Nerve cells in the brain and spine stop working properly affecting walking, speaking, swallowing, gripping things and even breathing. MND is a progressive disease. It can come on over a few weeks, initially on one side of the body and gradually get worse.

How many people get it?

It affects about 2 in every 100,000 people every year The NHS reckon there are about 5,000 people in the UK with MND.

Who gets it?

MND is very rare under 40 and usually develops over the age of 50. The most common age of onset is around 75-79. It is more common in men than women. Research suggests the estimated lifetime risk of developing MND is approximately 1 in 350 for men and 1 in 500 for women. The same article put the rate of MND in men as 54% higher than in women.

Does it run in families?

Not really. About 5% of cases are linked to a faulty gene that obviously is passed down through the generations but most cases are not hereditary. In truth, we don’t really know what causes most cases. It doesn’t appear to be lifestyle-related. There may be an environmental factor that triggers the disease in those susceptible to it.

Does it affect the brain?

Not usually. There is a type of MND that is associated with dementia. But in most cases the brain, intelligence and emotions are unaffected. Senses are also unaffected (you can also still hear, see, smell etc).

Does it kill?

Eventually people with MND will have difficulty breathing. Most people (70%) die within 3-5 years of developing the disease but a few (c10%) will live for more than ten years.

What are the symptoms?

Usually early symptoms are difficulties with:

  • gripping things,
  • walking (perhaps dragging a leg) and/or 
  • speaking (or shouting or singing).
Where can I find out more?

The NHS Choice website has an interview with Kevan - a man who got MND in his 40s.

There’s more at: 

Date published 28/08/14
Date of last review 28/08/14
Date of next review 28/08/17


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