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7 Things You Need to Know About ALS

Important information about amyotrophic lateral sclerosis, the fatal disease that affects more than 20,000 Americans at any given time.

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ALS doesn’t discriminate among age groups

Although ALS most commonly occurs in people between the ages of 50 and 70 (the average age of diagnosis is 55), the disease can strike people in their 20s and 30s. Pat Quinn, the ALS patient who is credited with starting 2014’s Ice Bucket Challenge, is 31. World-renowned scientist Stephen Hawking, the most well-known ALS sufferer, was diagnosed with the disease when he was 21. ALS is 20 percent more common in men than in women, and 93 percent of patients are Caucasian, according to the ALS Association.

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The earliest symptoms of ALS are easy to overlook

Cramped, stiff muscles are one of the first subtle signs of ALS. Other early symptoms include muscle weakness in one arm or leg, twitching, slurred or nasal speech, and difficulty swallowing, depending on where the motor neuron damage first manifests in the body, according to the National Institute of Neurological Disorders and Stroke. There is no one test for an ALS diagnosis (it is based mainly on patients’ symptoms), but tests can be done to rule out other conditions. These may include electromyography (EMG), which records electrical activity in the muscles, and a nerve conduction study (NCS), which tests the nerves’ ability to send a signal. Abnormalities in these test results may suggest damage to peripheral nerves or muscle disease rather than ALS. (Find out the hidden muscles that could be causing you pain.)

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Someone in America is diagnosed with ALS every 90 minutes

Each year, over 6,000 U.S. people are diagnosed with ALS, or one person about every 90 minutes. Someone also dies from ALS every 90 minutes. The disease can cost patients more than $200,000 per year.

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ALS patients’ minds remain sharp

Although ALS is physically debilitating, the disease doesn’t affect senses like sight, hearing, smell, taste, and touch, nor does it affect a person’s mental acuity or intelligence. When patients can no longer speak or move, they can use technological advances like eye tracking, which monitors a patient’s eyeball movement and allows them to spell words that are spoken by a computer, or to play a virtual piano without needing to move any other muscles. (From 1985 until his passing in 2018, Hawking communicated through a speech-generating device, which he controlled with a single cheek muscle.)

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There is no cure for ALS

The FDA approved the first treatment to help prolong the life of those with ALS in 1995, but there is still no cure. The treatment, Riluzole, slows the progression of ALS by blocking the release of glutamate, a compound believed to injure nerve cells. Yet medication “at best only postpones death for a few months, and does not preclude the need for supportive care and practical help,” reported a U.K. study on ALS patients. A 2013 study in the journal Annals of Neurology found a link between eating bright-colored fruits and vegetables, which are packed with antioxidants called carotenoids, and a lower risk or slower onset of ALS. In 2017, the FDA approved of Radicava (edaravone), the first new ALS treatment since Riluzole. After a six-week clinical trial in Japan, the drug was found to slow down the decline in physical ability in patients..

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Brain injuries may be a risk factor

A National Football League-funded study compared the brains of 12 deceased professional athletes (who all had experienced repeated concussions while playing) with those of 12 patients who had died from ALS, and found that abnormalities in the brains and spinal cords of the two groups mirrored each other. Researchers say that the protein aberrations found in both patients affected by brain injuries and those with neurodegenerative disease like ALS may be linked to athletic trauma. “The play of contact sports, such as boxing, football and hockey, might be associated,” the authors, led by Dr. Ann C. McKee, told the Los Angeles Times. “Whether repetitive head trauma alone provokes these neurodegenerative cascades, or only in association with certain genetic constellations remains to be determined.” Other studies have found an 11-fold increased risk of ALS among Italian soccer players who had multiple head injuries and a greater ALS risk among people who have served in the military, CNN reported. (Find out the 50 facts your brain wishes you knew.)

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ALS is fatal

ALS causes the nerve cells in the brain and spinal cord to degenerate. As a result, patients’ nervous systems progressively lose function until they experience life-threatening infection, heart attack or heart failure, blood clots, or breathing problems. Most patients die within three to five years of diagnosis. About 20 percent of ALS patients live five years or more, and up to 10 percent live for more than 10 years, according to data collected by the Robert Packard Center for ALS Research at Johns Hopkins. Remarkably, Hawking lived with the condition for over five decades. Find out how Hawking did it here, and visit alsa.org to learn more about symptoms, research, and donating.

Next, find out the 15 things neurologists do to prevent Alzheimer’s disease.

Originally Published in Reader's Digest