Frequently Asked Questions (FAQs) about ALS

When someone is diagnosed with a major medical condition, one of the first thing they tend to do is get online to find all they can about it. With more complex diseases such as amyotrophic lateral sclerosis, that often means visiting a lot of different sites to find accurate answers to the most urgent questions.

Whether you or a loved one has recently been diagnosed with ALS, you are trying to find answers to your questions or you simply want to learn more about the condition, here are some of the most frequently asked questions about ALS together with detailed answers.

What is ALS?

Also known as Lou Gehrig’s disease, ALS is a neurodegenerative condition that affects the motor neurons which serve our muscles. These neurons normally carry electrical signals from the brain to our muscles, providing the instructions to make voluntary movements such as walking.

Graphic showing how ALS affects nerve cells

The disease gradually damages these neurons and causes the nerves to die which means that muscles become increasingly weakened and eventually atrophy occurs.

ALS generally starts in a localized area of the body such as the hands, with feelings of weakness, but then spreads to the rest of the body, causing gradual loss of mobility and eventual paralysis. Weakness also occurs in the muscles used for crucial processes such as breathing and swallowing.

What Causes ALS?

ALS leads to the degeneration and death of nerve cells and in the vast majority of cases the cause is not known. In around 10% of cases, however, there is thought to be a familial or genetic component.

Research has highlighted a number of areas that might affect the development of ALS, including oxidative stress, overactive immune systems and mitochondrial dysfunction.

How Many People Have ALS?

ALS  is a relatively rare condition. According to the ALS Association, around 5,000 people are newly diagnosed with the disease in the US each year and there are thought to be 16,000 living with it at any particular time in the states.

The vast majority of people are diagnosed with ALS between the ages of 40 and 70 but it can also, much less frequently, develop in younger adults.

What are the Main Symptoms of ALS?

Early symptoms of ALS include muscle weakness in the extremities, muscle twitches, fatigue, and stiffness in the muscles. A person might experience poor balance or have difficulty walking. Another early symptom is slurred speech.

As the disease progresses, symptoms will worsen. The individual may have difficulty swallowing and breathing and gradual loss of muscle function begins to lead to full paralysis. In the later stages of the disease, the whole body is paralyzed and breathing becomes more and more difficult.

Is ALS Contagious?

No. ALS is not contagious and cannot be transmitted to another person from someone who has the disease. 

Does ALS Run in the family?

Three generations of a family
Most cases of ALS are deemed to be sporadic, i.e. not inherited

There has been a significant amount of research done in this area. About 90% of cases are considered sporadic which basically means they have no identifiable genetic component. In 10% of cases, there is a familial connection which means that one or more parent had a gene associated with the disease.

Just because someone in a family has ALS, however, does not mean that another family member will necessarily inherit the genes associated with ALS and, even if they do, it doesn’t mean they will go on to develop the disease.

This is an area that is just beginning to yield more interesting information about ALS, but now it is still in the early stages and needs a lot more research. It may be discovered that more cases that were previously considered sporadic might have had a genetic component.

Is There a Cure for ALS?

There is currently no cure for ALS but there are various medicines such as Riluzole and Radicava that have been shown to potentially slow the progression of the disease. Most of the treatment options, in respect to ALS, are currently focused around managing the symptoms associated with the disease and trying to slow its progression.

Is ALS Always Fatal?

ALS is considered fatal. As the disease progresses, the nerves are destroyed and muscles atrophy. Most people die because of respiratory failure or complications associated with the progression of the disease.

About half of those diagnosed with ALS will die within 3 to 5 years, with only 10% surviving beyond 10 years. Those diagnosed in their teens or early twenties, however, often experience the disease progressing at a much slower rate and therefore live for much longer than the typical life expectancy of an ALS patient.

Did Stephen Hawking have ALS?

Stephen Hawking was probably one of the most well-known individuals to be diagnosed with ALS. He was diagnosed in his early 20s and, despite being severely disabled for a large part of his life, was able to contribute a huge amount to the world of science. He passed away recently at the age of 76, having lived for 55 years with the disease.