In this blog post, we’ll explore the significance of this movement—which goes beyond a simple campaign—and examine the reality of ALS that we all need to consider together.
“Whoosh~, Ouch! It’s cold!” Recently, videos of people pouring ice water over their heads have been popping up frequently on Facebook, YouTube, and other platforms. This relay of pouring ice water, in which many celebrities and friends are participating, is called the “Ice Bucket Challenge” and is spreading rapidly. The Ice Bucket Challenge, which spreads at an incredible speed as each person nominates three others, was started with the goal of understanding the suffering of people with ALS and raising awareness for them. Public interest began to grow after the renowned scientist Stephen Hawking was diagnosed with the disease, and with the Ice Bucket Challenge becoming a major social issue, there is now hardly anyone who does not know the name “ALS.” In this article, let’s take a closer look at what ALS is, its symptoms and causes, and the available treatments.
ALS is not merely a disease that causes physical paralysis; it imposes a profound emotional and financial burden on patients and their families. As a result, many people participate in various charitable donations and volunteer activities to alleviate the suffering caused by ALS. These efforts not only provide direct assistance to patients but also play a crucial role in raising awareness of ALS throughout society.
First, the scientific name for the disease commonly known as Lou Gehrig’s disease is amyotrophic lateral sclerosis (ALS), and the Korean name is “muscle atrophy lateral sclerosis.” Because the medical name is difficult to pronounce, the disease is more widely known as Lou Gehrig’s disease, named after the baseball player who suffered from it. Our bodies contain nerve cells that connect the brain to various organs. Like the separation of powers in our country, nerve cells are divided into three types based on their functions. First, there are sensory neurons, which transmit information from sensory organs such as the eyes, nose, tongue, skin, and ears to the brain; association neurons, which receive and process sensory information from the brain and spinal cord and connect nerve cells; and motor neurons, which initiate movement based on the results processed by the association neurons. Amyotrophic lateral sclerosis (ALS) is a disease that destroys only the motor neurons among these. It destroys both the upper motor neurons in the brain, which command movement, and the lower motor neurons in the spinal cord, leading to gradual paralysis starting from the limb muscles and progressing to the respiratory muscles. Consequently, the first symptoms involve paralysis of the muscles in the face, limbs, and trunk—areas controlled by the upper motor neurons—resulting in an inability to control the limbs and face voluntarily. This explains why the body and facial expressions often freeze into strange, rigid postures—a common image associated with ALS. As the disease progresses further, the lower motor neurons are also destroyed, leading to paralysis of the tongue and respiratory muscles they control. Consequently, patients struggle to speak clearly, and when eating, the contraction of certain tongue muscles makes them prone to choking. Additionally, because the tongue muscles contract, food cannot be moved properly, leading to instances where food intended for the esophagus instead enters the windpipe. This can cause food to enter the lungs, resulting in pneumonia. As paralysis progresses to the respiratory muscles, patients are unable to breathe properly, leading to respiratory failure and ultimately death—this is ALS.
The exact cause of ALS has not yet been clearly identified, and only various hypotheses exist. Since genetic mutations in certain genes on chromosome 21 have been identified in some ALS patients, a genetic factor has become the primary hypothesis. In fact, eight genes have been identified to date as being associated with ALS.
However, since these mutations have been found in only a very small proportion of ALS patients, they cannot yet be identified as the direct cause. Other hypotheses include the idea that ALS occurs when the process by which cells receive signals to self-destruct malfunctions, the theory that a specific virus causes ALS, and the suggestion that toxins from a harmful environment trigger the disease. Nevertheless, the exact cause remains unknown. Consequently, a cure for ALS remains elusive. Currently, the only medication approved for ALS is Riluzole, which is believed to extend the lives of patients by several months. This works by interfering with the activity of sodium channels—which play a role in the function of damaged motor neurons—thereby prolonging survival. However, while it slightly extends survival time, its therapeutic efficacy against the disease itself has not yet been confirmed.
As the Ice Bucket Challenge has spread, many people have renewed their interest in ALS, and support for ALS patients continues to grow. The reason participants pour ice water over themselves in the Ice Bucket Challenge is that the muscle contraction experienced in that moment resembles the pain ALS patients feel on a daily basis. While it’s fun to play around and enjoy the challenge, I hope it serves as an opportunity to raise awareness about ALS and offer a helping hand, in line with the event’s original purpose. Furthermore, I hope that through this campaign, research into treatments for ALS will become more active, more funds will be invested in research, and ultimately, a cure for this disease will be discovered.
Continuous interest and research into ALS are extremely important. Many scientists are working hard to find new treatments, and this research gives us hope that the day will come when ALS is completely conquered. Therefore, we must all spare no effort in showing our care and support for ALS patients. This goes beyond mere donations and volunteer work; it includes sharing accurate understanding and knowledge about ALS and participating in efforts to raise public awareness. If we work together, we will eventually overcome this dreaded disease.
