In this blog post, we explore the meaning beyond the simple campaign and the reality of ALS that we should all consider together.
“Whoosh~, Ugh! It’s freezing!” Recently, videos of people dumping ice water on themselves have been frequently appearing on Facebook and YouTube. This ice-dousing relay, called the ‘Ice Bucket Challenge,’ is spreading widely as many celebrities and friends join in. The Ice Bucket Challenge spreads incredibly fast as each person nominates three others. It began with the purpose of understanding the suffering of people with ALS and raising awareness for them. After renowned scientist Stephen Hawking was diagnosed with this disease, public interest began to grow. Now, with the Ice Bucket Challenge becoming a social phenomenon, almost no one is unaware of ALS. This article will explore what ALS is, its symptoms and causes, and the current treatment options available.
Lou Gehrig’s disease is not merely a condition causing physical paralysis; it imposes profound emotional and financial burdens on patients and their families. Consequently, many people participate in various donations and volunteer activities to alleviate the suffering associated with Lou Gehrig’s disease. These efforts not only provide direct assistance to patients but also play a crucial role in raising awareness about Lou Gehrig’s disease throughout society.
First, the disease commonly known as Lou Gehrig’s disease is scientifically named amyotrophic lateral sclerosis (ALS), and its Korean name is ‘muscle atrophy lateral sclerosis’. Due to the difficulty of the disease name, it 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 each organ. These nerve cells are divided into three types based on their roles, much like the separation of powers in our country. First, there are sensory nerve cells that transmit information from sensory organs like the eyes, nose, tongue, skin, and ears to the brain. Next are association nerve cells, located in the brain and spinal cord, which receive and process sensory information and connect nerve cells. Finally, there are motor nerve cells that initiate movement based on the processed results from the association nerve cells. Amyotrophic lateral sclerosis (ALS) is a disease that specifically destroys only the motor neurons. It destroys both the upper motor neurons in the brain that command movement and the lower motor neurons in the spinal cord that command movement, leading to gradual paralysis starting from the limb muscles and progressing to the respiratory muscles. Consequently, the symptoms begin with paralysis of the muscles in the face, limbs, and trunk, which are controlled by the upper motor neurons, making it impossible to move the arms, legs, and face freely. This is why, as commonly associated with ALS, the body and facial expressions freeze into strange, rigid postures. As the disease progresses further, the lower motor neurons are also destroyed, leading to paralysis of the tongue and respiratory muscles they control. Consequently, speech becomes slurred, and during eating, contraction of certain tongue muscles can easily cause choking. Furthermore, because the tongue muscles contract, food cannot be moved properly. This can cause food that should go down the esophagus to enter the airway instead. Consequently, food can enter the lungs, leading to pneumonia. When paralysis progresses to the respiratory muscles, breathing becomes impossible, leading to respiratory failure and death. This is ALS.
The cause of ALS remains unclear, with only various hypotheses existing. Genetic factors are the primary hypothesis, as mutations in specific genes on chromosome 21 have been identified in some ALS patients. To date, eight genes have been linked to ALS.
However, since this has only been found in a very small number of ALS patients, it cannot yet be definitively stated as the direct cause. Other hypotheses include: the theory that ALS occurs when the process of programmed cell death (apoptosis) malfunctions; the theory that a specific virus causes ALS; and the theory that toxins from harmful environments trigger the onset of ALS. Nevertheless, the exact cause remains unknown. Therefore, a cure for ALS remains elusive. Currently, only the drug Riluzole is recognized as a treatment for ALS, as it is believed to extend the life of patients by several months. This works by interfering with the activity of sodium channels involved in the function of damaged motor neurons, thereby prolonging survival. However, it only slightly extends survival time; its therapeutic effect on the disease itself has not yet been confirmed.
As the Ice Bucket Challenge spread, many people have renewed their interest in ALS, and support for ALS patients continues. The reason for pouring ice water over one’s head in the Ice Bucket Challenge is that the muscle contraction experienced in that moment resembles the pain ALS patients feel daily. While it’s fine to pour ice water, joke around, and have fun, I hope it becomes an opportunity to show interest in ALS and offer a helping hand, in line with the event’s original purpose. Furthermore, I hope this campaign spurs more active research into ALS treatments, attracts greater funding for studies, and ultimately leads to the discovery of a cure.
Sustained attention and research into ALS are critically important. Many scientists are striving to find new treatments, and this research gives hope that one day we will completely conquer ALS. Therefore, we should all spare no effort in showing small acts of care and support for ALS patients. This includes not only simple donations and volunteering, but also sharing accurate understanding and knowledge about ALS, and participating in raising social awareness. If we work together, we can overcome this dreaded disease someday.
