10 Facts About ALS

The name amyotrophic lateral sclerosis doesn’t readily slip off the tongue, but this disease has become more well known in recent years, thanks in part to the ALS ice bucket challenge that took place a few years ago.

What is ALS?

Amyotrophic lateral sclerosis is a neurodegenerative disease that attacks the cells of the nervous system and the brain.

In normal circumstances, if we want to move our arms or legs, a message is sent from the brain, through the spinal cord and along a bunch of neural networks to make it happen. These networks are made up of nerve cells and neurons. We also get messages heading back to the brain relating sensations such as heat, cold and pain.

ALS attacks the nerves in these networks, degrading them to such an extent that they stop working. That means individuals diagnosed with ALS soon become unable to contract muscles or handle complex motions. ALS can start in a localized area such as the hands and arms but then begins to spread throughout the body.

Whilst awareness of amyotrophic lateral sclerosis has certainly increased over recent years, many people still do not know too much about the disease, so below are 10 facts about ALS you may not currently be aware of.

1. There’s no cure

While there has been a lot of research into ALS, no definitive cause has been discovered. Unfortunately, a cure has also not been found, however there are some treatments available for ALS that can manage the associated symptoms and slow down the progression of the disease.

ALS is a chronic degenerative disease that leads to increasing loss of muscle function as neurons around the body are destroyed. It is unfortunately fatal and individuals who have the disease will face huge challenges as symptoms develop. 

2. ALS is also known as Lou Gehrig’s disease

The disease is named after Lou Gehrig who was a famous baseball player for the New York Yankees.

After playing 17 seasons, he developed the disease during the 1938 season and had to retire. Gehrig’s form started to dip and he reported physical changes that were taking place about halfway through the season. He retired in 1939 and died in 1941.

3. Who does ALS affect?

In the US alone, ALS affects around 16,000 people and there are 2 new cases a year per 100,000 people. According to the ALS Association, the average age when someone develops the disease is between 55 and 65 years old. The number of new cases increases with age.

Having said that, ALS does affect younger people too. Stephen Hawking was only 21 when he was diagnosed with the disease. 

4. More men get ALS

A number of neurogenerative diseases exhibit a disparity between the genders. MS, for instance, affects women more than men. ALS occurs 1.57 times more in men than women, though this difference largely disappears when the disease occurs over the age of 70.

There is also evidence to suggest that white males and white females are twice as likely to develop the disease than black men and women.

5. The first symptoms of ALS

The symptoms of ALS in the initial stages vary from person to person but the most prominent one is muscle weakness in a specific area of the body such as the hands and arms. The first time it may be noticed is when someone has difficulty handling intricate movements such as doing up buttons.

It can appear anywhere on the body, however, causing weakness in limbs, the face, tongue, neck and even ‘internal’ areas like the diaphragm. From there, the disease begins to spread.

6. Familial vs sporadic ALS

About 5 to 10% of ALS cases can be attributed to genetics, in other words, inherited from someone who had the disease. The vast majority of cases though are sporadic which means there is no clear cause related to genetics. Recent research, however, has shown that there may be a much bigger genetic component that first thought.

7. Life expectancy and ALS

One of the most worrying things about ALS is the life expectancy. On average, 50% of individuals who develop the disease will live more than three years. Only 10% are likely to survive more than ten years. In rare cases, such Stephen Hawking’s ALS diagnosis, individuals can live far beyond the average life expectancy.

8. Military personnel and athletes may be more susceptible

Recent research has suggested that nerve damage through excessive physical activity might precipitate the start of ALS in many cases. This is supported by the fact that army veterans and athletes who have sustained nerve damage during their activities are more likely to get ALS.

9. It may be several diseases

The difficulty with finding a cause and cure for ALS could be enhanced due to the fact it may actually be multiple diseases rather than a single disease. This means that there may be several different factors involved in its development and therefore it’s more difficult to understand and ultimately cure.

10. It takes on average 12 months to diagnose

Diagnosis of neurodegenerative diseases has improved over the last decade or so but is still slow in many cases. ALS can take on average 12 months to fully diagnose because of people’s lack of knowledge of the symptoms, something which delays seeking medical help, and lack of training for physicians to carry out a full diagnosis.