What is ALS, the neurological disease that actor and playwright Sam Shepard died from?

Sam Shepard, the Oscar-nominated actor and Pulitzer Prize-winning playwright has sadly died from complications related to amyotrophic lateral sclerosis, or ALS.

Often referred to as Lou Gehrig’s disease, the condition is a neurological disorder in which the motor neurons that control muscle function slowly breakdown and eventually die. This is known as neurodegeneration.

According to the NHS, it isn’t known what causes the disease, but in about 5% of cases there’s a family history of either motor neurone disease or a related condition called frontotemporal dementia.

This is known as familial motor neurone disease. In most of these cases, faulty genes have been identified as making a major contribution to the development of the condition.

The NHS says early symptoms of ALS can include a weakened grip – which can cause difficulty picking up or holding objects, weakness at the shoulder which makes lifting the arm difficult, a ‘foot drop’ or dragging of the leg and slurred speech.

The disease starts in the limbs, hands or feet and destroys nerve cells as it progresses, weakening the body’s muscles and eventually preventing the body’s ability to chew, swallow, speak and even breathe.

While there are no exact figures on the number of people in the UK affected specifically by ALS, Motor neurone affects around two in every 100,000 people in the UK each year, which means there are about 5,000 people living with the condition in the UK at any one time.

The condition can affect adults of all ages, including teenagers, although it’s much more commonly diagnosed in people over 40 and many people don’t start experiencing symptoms until their 60s.

While it’s not yet known which ALS-related health complications Sam Shepard was experiencing, common health problems related to ALS include difficulty breathing, eating, sleeping and speaking.

According to the Mayo Clinic in the US, the most common cause of death associated with ALS is respiratory failure, and death from ALS typically occurs about three to five years after symptoms begin, although some people can live for ten years or longer after diagnosis.

At the moment there is no known cure for the disease but progress is being made into research thanks in part to funding raised by the viral ALS ice bucket challenge. Remember that?

Though some dismissed the online campaign as a stunt, experts say it has helped to fund research that has led to an important breakthrough into the disease.

A study given $1m (£760,000) raised by the ALS Association’s campaign has led to the discovery of a gene that appears to be behind some cases of the disease.

The challenge, which people dunk a bucket of iced water over their heads in return for donations, raised more than $100m (£76m) in a month, and was able to support numerous research projects.

One of which was Massachusetts University Medical School’s Project MinE, which has now identified the role of a gene called NEK1 in ALS.

It is only associated with 3 per cent of all ALS cases, but it is present in both the familial and sporadic forms of the disease.

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