The Paralyzing, Stealthy Killer: What is ALS?

• ALS pops up randomly in usually very healthy individuals
• 30,000 Americans a year are diagnosed with this disease
• life expectancy is 3-5 years (can pass as quickly as 6 mo or live up to 10 yrs)
• starts at the legs, arms, throat or mouth and progressively gets worse
• lose all the voluntary muscles in your body
• 1 out of 50,000 people end up with this disease
• no known cause
• no known cure
• no known treatment that helps reverse the degenerative process

We’ve all seen celebrities online doing the Ice Bucket Challenge and calling out other celebrities to challenge them to do it as well. Tyler Perry, Oprah Winfrey, Taylor Swift, Iyanla Vanzant, Lady Gaga and even Bill Gates have participated in this challenge to raise awareness for ALS. Many people have no idea what ALS is, which is the very reason why people who have power are pulling together to shed light on the disease and raise money to help fund finding a cure.

What is ALS?

ALS stands for amyotrophic lateral sclerosis and is commonly referred to as Lou Gehrig's Disease. It is a fatal, degenerative disease that paralyzes the person over time until they are literally trapped in their own body, fully cognitive but unable to move a muscle. This disease is tenacious and progresses quickly with more than “50% of patients dying within 3 years of onset” (Mitchell & Borasio, 2007).

There are other variations of this disease that are very similar in symptoms, like Kennedy’s Syndrome and multiple sclerosis. Because the symptoms of these diseases are very similar--loss of motor skills, especially in the extremities--patients have often been misdiagnosed (Kennedy’s Disease Association, 2010). One other thing that all three of these diseases share in common is that there is no cure. Treatment of ALS is mainly palliative care, to try to make the patient as comfortable as possible while alleviating pain. In other words, keep them comfortable and pain-free until they pass.

Risk Factors for ALS

Some studies have shown weak correlations (10%) to a family history of amyotrophic lateral sclerosis with a higher perceived risk for military personnel and Italian football players (Mitchell & Borasio, 2007). But again, these correlations are weak and have not been positively identified as a serious risk factors of ALS.

Demographics of ALS patients show that men are more likely to be diagnosed than women, and the onset of this disease often occurs later in life, usually after the patient has lived 60% or more of their natural lifespan (Mitchell & Borasio, 2007). This disease is also seen in late-teens, as well as ages 20s and 30s.

Why is this Disease so Baffling & Scary?

The research on ALS is still in its early stages. Doctors and researchers are baffled by the disease, mystified by what’s causing it with even less of an idea of how to cure it. It’s baffling because an individual who has lived a healthy, vibrant life can suddenly, without warning, be struck down with disease and die in less than three years’ time. This is a highly progressive, degenerative disease, so after onset, the muscle functioning begins to deteriorate at an unprecedented speed.

If you don’t know what causes this disease, how can you put forth preventative measures to protect yourself?

Who is One of the Faces Behind the Ice Bucket Challenge?

Pete Frates, a former Boston College captain of the baseball team has ALS and is battling the incurable disease the best he can. He is one of the many faces representing this disease. Amyotrophic lateral sclerosis is a disease that paralyzes you, silences you, and then takes your life. Before the disease could silence him, he decided to raise as much awareness about the disease as he could, and what better way to do it than to use social networking sites where you can easily send out a single post and reach millions of people?

So Frates got on his Facebook account and challenged himself to do the Ice Bucket Challenge. Now granted, he did not literally have a bucket of ice cold water poured over him; instead, he bopped his head to Vanilla Ice’s “Ice, Ice, Baby.” Later, he took on the challenge again and this time, he did have the ice water poured over him then challenged his circle of friends (Steele, 2014).

He was diagnosed in 2012; it’s 2014. With a life expectancy of 3 years with this disease, Mr. Frates’ time here on this earth is drawing to a close. His health has declined drastically and paralysis has taken over his entire body. Because the tongue and throat are muscles too and ALS is a muscle degenerative disease, Mr. Frates has lost the ability to speak (O’Connor, 2014). But he hasn’t lost his voice because through that single video, he has helped spark a fire where now the world is speaking for him, even the stars.

As of date (August 19, 2014), over $22 million dollars have been raised in awareness of amyotrophic lateral sclerosis (ALS, 2014), and celebrities and people all over the world are still taking on the ice bucket challenge and shining awareness on this horrific disease.

Some people downplay the challenge, arguing that it is not an effective way to raise awareness for ALS. I beg to differ. Most people are not only taking on the challenge; they are taking on the challenge and still making a donation to the organization. The fun thrill of the challenge is a symbol of victory, of triumphing. That we all can raise funds and awareness while taking on a dare, having fun, and laughing in the face of something that was meant to destroy us.

ALS. (2014, August). Ice bucket challenge donations reach $22.9 million to the ALS Association. Retrieved from http://www.alsa.org/news/media/press-releases/ice-bucket-challenge-081914.html

O’Conner, B. (2014, August). How one man accepted the challenge. ESPN Boston. Retrieved from http://espn.go.com/boston/story/_/id/11366772/in-als-fight-pete-frates-message-loud-clear

Mitchell, J. D., & Borasio, G. D. (2007). Amyotrophic lateral sclerosis. The Lancet, 369(9578), 2031-41. Retrieved from http://ezproxy.snhu.edu/login?url=http://search.proquest.c

Steel, A. (2014, August). ‘Ice bucket challenge’ has raised millions for ALS association. NY Times. Retrieved from http://www.nytimes.com/2014/08/18/business/ice-bucket-challenge-has-raised-millions-for-als-association.html.