9 Facts About ALS Every Ice Bucket Challenger Should Know
You’ve probably watched dozens of videos of friends and celebrities dumping buckets of ice water over their heads and challenging others to do the same. This video, though, cuts right to the heart of it.
It’s not easy to get attention for an awareness campaign these days, so the ice bucket is a stroke of genius. The videos are viral and momentum seems to keep building. Donations to the ALS Association are rolling in. But there’s more to it than the ice bucket and the videos. How much do you really know about amyotrophic lateral sclerosis (ALS), a.k.a. Lou Gehrig’s disease?
“ALS is so f*** scary. You have no idea.” -Anthony Carbajal
ALS is a neurological disease that robs its victims of the ability to move and, eventually, to breathe. It attacks the nerve cells that control voluntary muscle action, and it progresses at a rapid pace. Muscles lose function and begin to atrophy. Eventually, people with ALS lose the ability to move. It doesn’t affect the intelligence level or sense of touch, hearing, sight, smell, or taste. However, it can affect the muscles necessary for breathing. Here are a few more things you should know about ALS:
- ALS is not contagious.
- Anyone can get ALS. Genetics account for about 5-10 percent of ALS cases. There are about 12 gene mutations found to cause ALS and it takes only one parent to pass it down. The rest of the time, there is no known cause.
- About 30,000 people in the United States are living with ALS at any given time. According to the ALS Association, about 5,600 more are diagnosed each year.
- Early symptoms include muscle stiffness and weakness, slurred speech, manual dexterity problems, and difficulty swallowing.
- There’s no one medical test to diagnose ALS. It is diagnosed based on symptoms, neurological exam, and a series of tests to rule out other diseases.
- The leading cause of death for people with ALS is respiratory failure. According to the National Institute of Neurological Diseases and Stroke (NINDS), death usually occurs within 3-5 years, but about 10 percent of patients survive beyond 10 years.
- It’s rare, but ALS can stop progressing. Some people even experience a reversal of symptoms.
- There is no cure for ALS. An FDA-approved drug called riluzole (Rilutek) may help reduce neurological damage for a time. Other treatments are designed to address individual symptoms and improve quality of life.
- Research at the NINDS is ongoing, and the Ice Bucket Challenge is a fundraising success. As of August 22, The ALS Association reports receiving $53.3 million in donations compared to $2.2 million during the same time period last year (July 29 to August 21). In addition to their global research program, the ALS Association provides services to people living with ALS.
There are grumblings from people who dislike the campaign, think it’s silly, or are simply tired of those videos dominating their social media streams. You can only watch so many buckets over so many heads before you begin to tune out. Still raising awareness or money for any cause is a difficult endeavor. The ice bucket campaign has already done its job.
“You’re really, truly making a difference, and we’re so, so, so grateful.” -Anthony Carbajal
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Photo: VibeImages | iStock | Thinkstock
Video via ABC News