Demystifying ALS: Separating fact from fiction

Last updated June 17, 2024, by Susie Strachan
Fact-checked by Ines Martins, PhD

Amyotrophic lateral sclerosis (ALS) is a complex disease that has given rise to many misconceptions, including myths about sports injuries and misunderstandings about how it is inherited.

Whether you have been diagnosed with ALS or are a caregiver, it’s important to know ALS facts. Here are some common myths about the disease and the truth about each claim.

Playing sports can cause ALS

ALS is also known as Lou Gehrig’s disease because of the famous baseball player whose diagnosis in 1939 brought widespread attention to the condition.

This helped lead to the belief that there was a connection between playing sports and developing ALS, especially after other professional athletes, particularly football players, were diagnosed with it.

Some studies have observed a link between playing football and developing ALS. According to a study that looked at more than 19,000 men who played in the National Football League between the years of 1960 and 2019, 38 of them were diagnosed with ALS and 28 died from the condition.

While the study does not show that playing professional football causes ALS, it adds to existing evidence that ALS may be caused by repeated head trauma, which can occur more commonly in people playing professional or contact sports.

But there is no real evidence that being athletic or playing recreational sports increases your risk of having ALS.

ALS is contagious

Some people believe you can catch ALS from someone who has it.

Simply put, ALS isn’t contagious.

ALS cannot be transmitted from person to person through casual contact, such as touching or being in close proximity to someone with the disease, the way you would catch the common cold.

But there is strong evidence your genetics affect your risk of developing ALS. Mutations in more than a dozen genes have been definitively linked with ALS, and many more genes have shown to potentially be associated with disease risk.

Life expectancy after diagnosis is very short

There’s a belief that your life is over within two to five years after being diagnosed with ALS. While it’s true that ALS is a progressive and fatal neurodegenerative disease, the survival time after diagnosis varies widely.

About 20% of people with ALS live more than five years, and some 10% live for 10 years or more. A small percentage live for decades, as was the case with renowned physicist Stephen Hawking who lived for more than 50 years after his diagnosis.

Younger people and those with limb-onset ALS, whose initial symptoms affect the muscles in the arms or legs, tend to have a better prognosis than those with bulbar-onset ALS, who experience weakness in head and neck muscles first. Advances in medical care have improved quality of life, and research and clinical trials offer hope for new ALS treatments.

Lyme disease can lead to ALS

The idea that ALS is caused by Lyme disease is likely based on them having some similar neurological symptoms, such as muscle weakness and fatigue.

While there isn’t a known cure for ALS, Lyme disease, which is transmitted to people through a bite from an infected tick, can often be treated effectively with antibiotics. In ALS, however, treatments focus on managing symptoms.

Young people don’t get ALS

It’s incorrect to think that ALS only affects older adults.

While ALS is more commonly diagnosed in people between the ages of 55 and 75, it can strike at any age, including in younger adults, and, in rare cases, teenagers and young children.

This belief can lead to delays in diagnosis and treatment for younger people who have ALS symptoms, as healthcare providers might initially mistake it for another health condition.

ALS is inherited

It’s often thought you inherit ALS from one or both of your parents.

It is true there is a hereditary component to ALS in about 10% of cases, in which case the disease is known as familial ALS.

But the majority of ALS cases occur sporadically, without a known family history.

Still, about 10% of people with sporadic ALS carry mutations in known ALS genes. Thus, both familial and sporadic ALS patients should be offered genetic testing to check for the most common ALS-causing mutations. Identifying a disease-associated mutation is generally not sufficient to confirm a diagnosis of ALS, but can help determine the best treatment course.

ALS mostly affects men

While ALS was initially thought to be more common in men, studies show the gender gap is narrower than previously believed.

While ALS is about 20% more common in men, the diagnosis rates for men and women tend to equalize with increasing age​.

Research is being done into whether ALS affects men and women differently, perhaps due to hormonal differences between the sexes, or genetic or environmental factors.

ALS won’t affect your brain

There’s a misconception that while ALS makes you weak in body, you still have full command of your mind and cognitive functions.

One of the key facts about ALS is that it affects the motor neurons responsible for controlling voluntary muscle movements. However, it can also impact cognition and behavior in some people.

Newer studies show that up to half of ALS patients will experience cognitive or behavioral changes at some point during the course of their disease. The most common changes are abnormalities in executive function — your ability to plan your actions and regulate your own behavior.

ALS can be cured

People have said ALS can be cured by taking certain supplements, getting insulin shots, or using a portable neuromodulation stimulator device.

Similarly, another belief about ALS cures is that if you know someone who claims to have cured their ALS symptoms in some way, you should do everything they did and you will have the same outcome.

Currently, there is no cure for ALS.

However, there are approved treatments that can help slow disease progression and extend survival. There are also medications and nondrug treatments to help manage symptoms and improve your quality of life.

For science-backed information about alternative and off-label treatments for ALS, check out ALS Untangled, a peer-reviewed site that gives everything — from drinking red wine for its resveratrol compounds to taking copper supplements — a grade from A to F or a U for still yet unknown.

Understanding accurate ALS information can help you and your family make informed decisions about treatment and care. Your ALS healthcare team will discuss with you treatment options, setting up a daily routine, using adaptive equipment, taking care of your emotional well-being, and other aspects of living with ALS.

ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.