Like me, you probably know how to dump a bucket of ice water on your head. Maybe you even know how to create a great video. But what do you actually know about ALS, the degenerative disease that has inspired the now infamous “ice bucket challenge?”
If you’re like most people, the answer is probably little to nothing.
After completing an ice bucket challenge, I was a little alarmed at how little I knew about Amyotrophic lateral sclerosis (ALS), also known as Lou Gherig’s disease, other than it is a bad thing and Lou Gherig played baseball.
Fortunately, the ALS Association website offers a great, easy-to-understand definition:
“ALS is … a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.”
Here are a few more important facts:
• Approximately 5,600 people in the U.S. are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time.
• Although the life expectancy of an ALS patient averages about two to five years from the time of diagnosis, this disease is variable and many people live with quality for five years and more. More than half of all patients live more than three years after diagnosis.
• About 20 percent of people with ALS live five years or more and up to ten percent will survive more than ten years and five percent will live 20 years. There are people in whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed.
• ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries.
• ALS can strike anyone.
• The onset of ALS is insidious with muscle weakness or stiffness as early symptoms. Progression of weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and later breathing generally follows.
While it’s comforting to know that ALS is rare, it’s upsetting to know how debilitating the disease is — in some ways worse than most cancers.
That said, I hope other disease associations can think of great, catchy ways to get people involved in spreading awareness and raising money. There are so many health-related conditions that could use funding toward research. And in a week where we’d otherwise be thinking about back-to-school clothes and finishing off summer vacation (if we’re not thinking about Robin Williams and the Middle East crisis), the ALS “Ice Bucket Challenge” is a reminder that we have the power to build awareness and effect change, one person at a time.