8 Things to Know About ALS Before You #IceBucketChallenge

Important information about amyotrophic lateral sclerosis, the fatal disease behind the social media splash.

Before You Pour...

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The Ice Bucket Challenge has recently boomed on social media for ALS (amyotrophic lateral sclerosis) awareness; as of mid-August, more than $94 million has been donated, and more than 2.4 million challenge videos have been posted on Facebook. Critics claim that people should donate the cost of bagged ice instead of dumping it, or that it’s a waste of water—or that it doesn’t do much to humanize the devastating condition, also known as Lou Gehrig’s disease. Here are 8 eye-opening facts you should know about ALS, whether you’ve already gotten drenched or are debating to take the plunge.

ALS doesn't discriminate among age groups.

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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 the ice bucket craze after seeing a golfer dunk himself online for a relative with the disease, is 31. ALS is 20 percent more common in men than in women, and 93 percent of patients are Caucasian, according to the ALS Association.

The earliest symptoms of ALS are easy to overlook.

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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.

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Someone in America is diagnosed with ALS every 90 minutes.

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Each year, about 5,600 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.

ALS patients' minds remain sharp.

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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.

There is no cure for ALS.

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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. Many clinical trials are currently underway to identify risk factors and more treatments that slow disease progression or target specific symptoms, but much more work—and funding—is needed. 

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Brain injuries may be a risk factor.

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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.

ALS is fatal.

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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. Visit alsa.org to learn more about symptoms, research, and donating.

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