This blog post examines how the Ice Bucket Challenge impacted awareness of ALS and provided practical assistance.
In 2014, videos of celebrities dousing themselves with ice water frequently appeared on YouTube. This was part of the so-called “Ice Bucket Challenge” campaign, where participants nominated three others who then had to either pour ice water on themselves within 24 hours or donate $100 to the ALS Association in the US. This campaign began with the intention of briefly sharing in the suffering of ALS patients and encouraging public interest in their plight. The public responded positively, praising the campaign’s noble purpose. However, concerns gradually grew that the campaign risked becoming merely a one-time event as it increasingly morphed into a promotional gimmick and a form of entertainment. Consequently, opinions began to emerge that concrete and accurate information should be provided alongside the campaign to help the public understand ALS correctly and make it a more meaningful initiative.
According to global statistics, approximately 2 out of every 100,000 people develop ALS annually, and in Korea alone, over 1,500 patients suffer from the disease. Moreover, as the number of patients continues to rise, the argument grows stronger that this disease should no longer be treated lightly and that society as a whole must show warm concern. Therefore, this article aims to provide specific information to help the public understand ALS more accurately and in greater detail.
What exactly is ALS? It is a terrifying, incurable disease where motor neurons are destroyed, progressively robbing the body of voluntary movement. Eventually, even breathing becomes impossible, leading to death. It is known that over half of patients die within five years of diagnosis. The formal medical name for this disease is amyotrophic lateral sclerosis (ALS). It became known worldwide as Lou Gehrig’s disease after Lou Gehrig, the cleanup hitter for the New York Yankees in Major League Baseball, suffered from it, ended his playing career, and passed away. Furthermore, it garnered even more attention when it became known that Stephen Hawking, the world-renowned astrophysicist, also suffered from this disease.
As the formal name amyotrophic lateral sclerosis (ALS) suggests, this disease involves damage to the motor neurons responsible for voluntary movement. This leads to the gradual death of motor neurons, muscle atrophy, and stiffening of the nerves like stone. Simply put, it prevents us from moving our muscles as we wish. In the early stages, muscles in the hands, fingers, legs, and other areas gradually weaken and thin, making it difficult to lift objects or move comfortably. As time passes, symptoms worsen, with muscles progressively atrophying and degenerating. Moving the body becomes increasingly difficult, and tasks like chewing, swallowing, and speaking become impossible to perform properly. As the atrophied muscles degrade the neurons responsible for transmitting signals from the brain, the brain and the rest of the body lose their ability to interact. In other words, the body’s nervous system completely breaks down, making it impossible to act as intended. As the disease progresses to its terminal stage, the respiratory muscles weaken, gradually making breathing difficult. This, combined with a host of other complications, ultimately leads to death.
So why does ALS occur? Unfortunately, the exact cause of ALS remains unclear. Research currently relies on various hypotheses. Prominent theories include genetic mutations, glutamate excess, and viral infection.
First, let’s examine the genetic hypothesis. Research indicates that approximately 10% of ALS patients suffer from familial ALS due to genetic issues. Among these, about 20% are reported to have mutations on chromosome 21. Furthermore, it has been reported that a total of 8 genes can cause mutations leading to ALS. In other words, mutations in specific genes can selectively damage motor neurons, potentially leading to ALS.
Beyond genetic mutations, research is underway suggesting that excessive glutamate levels may play a significant role in ALS onset. This hypothesis posits that an excessive amount of glutamate, which transmits signals from the central nervous system to motor neurons, ultimately leads to the destruction of these motor neurons. In other words, excessive glutamate acts like a toxic substance, destroying cells. Other hypotheses include viral infections causing cell destruction or heavy metal accumulation disrupting nerves, leading to ALS. However, definitive verification for these remains elusive.
So, how should ALS be treated? Unfortunately, there is currently no known cure for ALS. Consequently, it is known as a notoriously incurable disease, with patients’ average life expectancy being only about 3 to 4 years. Currently, only methods to slow the disease’s progression as much as possible are available, primarily including drug therapy, physical therapy, and respiratory therapy.
Medication therapy uses a drug called Rilutek. As mentioned earlier, Rilutek is used to prevent glutamate, which is suspected to be one of the causes of ALS onset, from destroying nerve cells. However, since already destroyed nerves cannot be revived, it is impossible to return to the pre-disease state; it only slows the rate at which motor neurons are destroyed.
Furthermore, it is crucial to learn methods to delay physical disability as much as possible and replace weakened muscles with stronger ones. Combining physical therapy, occupational therapy, and respiratory therapy aims to delay physical deterioration as much as possible. However, these treatments also do not directly improve the disease itself; they merely slow its progression or provide some relief from discomfort.
These treatments, requiring years of continuation, also pose a significant financial burden. Because it is an incurable disease and management is extremely difficult, hospitals charge high costs. Consequently, some patients, judging treatment to be difficult, opt to perform only a certain amount of rehabilitation therapy at home as a substitute for treatment. In the United States, various charitable organizations conduct fundraising campaigns to establish specialized nursing homes for ALS patients in multiple states, with numerous volunteers assisting in their treatment and care. However, South Korea lacks such facilities, and the treatment of ALS patients is generally poor. As the number of ALS patients increases annually, calls are growing louder for South Korea to provide diverse welfare benefits similar to those in the United States.
We have now examined the symptoms, causes, and treatments of ALS. As evident from the preceding discussion, ALS is a devastating disease that inflicts immense suffering on both patients and their families. As many experts emphasize, the swift advancement of treatment technologies, the establishment of robust welfare benefits, and increased public awareness could provide significant support to ALS patients.
