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Understanding ALS

A diagnosis of ALS can be overwhelming. We’re here to make sure you have all the facts to better understand and navigate the disease.

What is ALS?

ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. ALS, commonly known as Lou Gehrig’s Disease, attacks cells in the brain and spinal cord that carry messages from your brain to your muscles. These cells are called motor neurons.

The “A” in ALS stands for amyotrophic, which translates literally from the Greek language as “no muscle nourishment.” “L” refers to lateral, or the areas in a person’s spinal cord where their motor neurons are located.

As the motor neurons degenerate and die, it leads to scarring — or sclerosis — in the spinal cord and brain — and the brain can no longer control muscle movement. When the muscles go unused, they atrophy, or waste away. This is when the symptoms of ALS, like the loss of ability to speak, eat, move, and breathe, begin to appear.

ALS tends to only affect motor neurons that control voluntary movement, like reaching to pick up a phone or stepping off a curb. Involuntary movements, such as blinking and bladder control, are generally not affected.

Who Gets ALS?

ALS can affect anyone, but our research with the ALS CARE database has found that 60% of patients with the disease are men and 93% are Caucasian. Research has also established that, for unknown reasons, military veterans and athletes are more likely to develop ALS.

Most patients are diagnosed with ALS between the ages of 40-70, but the disease can also develop in younger people. The average age for an ALS diagnosis is 55.

Approximately 30,000 Americans have the disease at any given time. Notable individuals who have been diagnosed with ALS include baseball great Lou Gehrig, renowned theoretical physicist Stephen Hawking, and former National Football League player, Steve Gleason.

While we don’t know the specific cause of ALS, there are two categories for the ways people develop ALS: sporadic and familial.

Sporadic ALS occurs in patients who have no family history of the disease. Sporadic ALS is the most common form of the disease in the United States, accounting for 90-95% of all cases. This type of ALS can affect anyone.

In 5-10% of U.S. cases, ALS is genetically inherited, which is known as Familial ALS. In families with Familial ALS, there is a 50% chance that each offspring will inherit the gene mutation that makes it possible for them to develop the disease.

Living with ALS

Half of all people with ALS live at least three years after they are diagnosed. Twenty percent of patients live five years or more, and up to 10% will live more than ten years.

Although there is still no cure or treatment that halts or reverses ALS, scientists have learned a lot about the physiology of ALS in the past few years. There are currently two FDA-approved drugs for treating ALS – riluzole (Rilutek) and edaravone (Radicava) – that can slow the progression of ALS in some people.

People with ALS may experience a better quality of life by participating in support groups and attending an ALS Association Certified Treatment Center of Excellence or a Recognized Treatment Center. These facilities provide a national standard of best-practice multidisciplinary care to help manage the symptoms of the disease and help people living with ALS maintain as much of their independence as possible for as long as possible.

According to the American Academy of Neurology’s Practice Parameter Update, studies have shown that receiving treatment at a multidisciplinary ALS care facility may prolong survival and improve quality of life.

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