Graphic of ALS

Top 5 Myths About ALS

ALS – amyotrophic lateral sclerosis – is a devastating disease that approximately 5,000 people are diagnosed with every year.

It’s also known as Lou Gehrig’s disease, named after the New York Yankees first baseman who was forced to retire in 1939 due to his illness. Awareness grew around ALS in 2014 during the wave of “ice bucket challenge” videos, in which people videotaped themselves dumping a bucket of ice on their heads and then challenged their friends to do the same on social media – or donate money for ALS research.

ALS causes nerve cells throughout the body to stop working and die. As the nerves lose their ability to control muscles, the body’s muscles weaken and eventually become paralyzed.

Early symptoms of ALS begin slowly and may look different depending on the person. At first a person may have trouble picking up a pen or lifting a coffee mug, while another person may become unable to control the pitch of their voice when speaking. Muscle weakness is the most common initial symptom.

More than half of people living with ALS, live with the disease for more than three years after being diagnosed – and many can live for five years or longer. However, the average life expectancy of a person with ALS is three to five years after they are diagnosed.

Research is ongoing to learn more about the disease. Here are some common myths about ALS.

MYTH #1: ALS is a muscle disease.

Although most symptoms of ALS are related to muscle control and activity, the true underlying cause is in the nerve cells.

MYTH #2: People under 45 can’t get ALS.

About 10% of all ALS cases are in people under the age of 45.

Most of the new cases of ALS are in people between the ages of 40 and 70 years of age, while the average onset of ALS is age 55.

MYTH #3: ALS only affects the body.

ALS can affect more than the nerves and muscles. About 20% of people with ALS develop rare complications that affect their cognitive and behavioral functions. For example, a rare form of ALS is frontotemporal degeneration – which causes changes in behavior, personality and speech.

Also, a common symptom with ALS is called “pseudobulbar affect,” in which the person cries or laughs at inappropriate times – or have difficulty suppressing emotions.

MYTH #4: ALS is only hereditary.

The majority – about 90% – of people diagnosed with ALS do not have a family history of the disease, and the cause is unknown.

Just 10% of ALS cases are inherited through a mutated gene. For these families, there is a 50% chance of passing on the gene mutation to their children.

MYTH #5: One of the main causes of ALS is Lyme disease.

Though Lyme disease and ALS have similar symptoms, there is no evidence that ALS can be caused by Lyme disease or other infections.

The risk factors for ALS are under research. There may be a combination of genetics and environmental factors that contribute to ALS.

This content has been reviewed and approved by Dr. Gina Lynem-Walker, an associate medical director at Blue Cross Blue Shield of Michigan.

This article is the eleventh in a year-long series explaining how to manage chronic conditions that can be costly for families and the health care system. For more information about the series, click here.

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