Ice Bucket Challenge Raising Awareness about Rare Disease
Over the last few weeks, the Ice Bucket Challenge has literally taken the nation by storm. People all over the country are doing it, even celebrities and politicians. So, what’s so fun about pouring a bucket of ice water over your head?
The ice bucket challenge got started when a former college baseball player with the disease (ALS) posted a Facebook video of himself pouring a bucket of ice water on himself. This video went viral, in turn inspiring tens of thousands of Americans to take the “Ice Bucket Challenge.” The challenge is to post a video of yourself getting ice water dumped on you, then challenge others to do the same or make a donation for ALS research. The donations have been pouring in. So far, $16 million have been donated to The ALS Association so far (compared to $1.8 million during the same time period last year). Besides raising money, the disease is getting incredible awareness as well.
What is ALS? ALS (amyotrophic lateral sclerosis) is a neurodegenerative disease that attacks the nerve cells in the brain and spinal cord. Most people know it as Lou Gehrig’s disease, named after the legendary baseball player for the New York Yankees who was diagnosed with ALS in 1939.
ALS is a relatively uncommon disease. The ALS Association estimates that 30,000 Americans have the disease, with roughly 5,600 new cases diagnosed each year. For comparison, there are about 29 million Americans with diabetes with 1.7 million new cases of diabetes per year. ALS is usually diagnosed in people between 40 and 70 years of age, and is more common in men than women. Though average life expectancy is two to five years from diagnosis, only about 10 percent of people with ALS live more than 10 years.
The cause of ALS is unknown. ALS occurs when motor neurons responsible for controlling voluntary muscle movements degenerate and die. The brain’s ability to communicate with muscles is cut off, and the muscles gradually waste away. Early signs may include muscle stiffness or weakness, but as the disease advances it can impair speech, swallowing, and breathing.
There is no cure for ALS. Treatments focus on slowing the progression of symptoms, preventing unnecessary complications and making patients more comfortable and independent. Currently, there is only one drug approved by the U.S. Food and Drug Administration (FDA) to treat ALS, called Riluzole which slows the disease progression in some people, perhaps by reducing levels of a chemical messenger in the brain (glutamate) that’s often present in higher levels in people with ALS. This drug only extends survival by two to three months. ALS is almost uniformly fatal.
The “ice bucket challenge” has involved more people in the fight against this rare but deadly disease. The heightened awareness and availability of research dollars will help ALS Association to collaborate with pharmaceutical companies and academia to expedite new treatments for people impacted by the disease.
This information is strictly an opinion of Dr Prakash, and is not intended to replace the advice of your doctor. Dr Chris Prakash is a contributing columnist, and author of eParisExtra’s “The Doctor is In” column. He is a medical oncologist at Texas Oncology Paris. He is board certified in Internal Medicine, Oncology and Hematology. He lives in Paris, TX with his wife and two children, and can be reached at 9037850031, or Sucharu.firstname.lastname@example.org