The Ice Bucket Challenge, which went viral on YouTube in 2014, was a campaign launched to raise awareness of ALS. Participants were doused in ice water and donated money to help bring the disease into the public eye, but there was concern that it would be a one-off event. The seriousness of the disease and the efforts to overcome it need sustained attention.
In 2014, videos of celebrities being doused in ice water became commonplace on YouTube. This was part of a campaign called the “Ice Bucket Challenge,” in which participants nominated three people to be doused in ice water within 24 hours or donate $100 to an ALS organization. The idea behind the campaign was to bring attention to the suffering of people with ALS and to share in their pain, if only for a moment. The public responded very favorably to the campaign, but as it became more of a publicity stunt and fun, there was a growing concern that it was becoming more than just a one-time event. As a result, it was suggested that the campaign should be accompanied by specific and accurate information to help the public better understand the disease and make it more meaningful.
According to global statistics, two out of every 100,000 people are affected by ALS every year, and more than 1,500 people in Korea are suffering from the disease. Moreover, as the number of patients continues to increase, there is a strong argument that the disease should no longer be treated lightly and that society as a whole should show warmth and concern. Therefore, in this article, we’ll provide specific information to help the public understand the disease more accurately and in detail.
What is ALS? It’s a terrifying, incurable disease that causes the destruction of motor nerve cells, resulting in the inability to move freely throughout the body, and later, the inability to breathe, which eventually leads to death. It is estimated that more than half of patients die within five years of the disease. Its full medical name is amyotrophic lateral sclerosis. Lou Gehrig, the number four hitter for the New York Yankees in Major League Baseball, suffered from the disease, which ended his career and led to his death, and it became known worldwide as Lou Gehrig”s disease. The disease was also recognized when world-renowned astrophysicist Stephen Hawking was diagnosed with the disease, bringing even more attention to the disease.
As its full name, amyotrophic lateral sclerosis, suggests, ALS is a disease in which the motor nerves responsible for voluntary movement in the body are damaged, causing motor neurons to gradually die, muscles to atrophy, and nerves to stiffen like stone. In other words, we lose the ability to move muscles throughout the body at will. In the early stages, the muscles in the hands, fingers, and legs gradually become weaker and thinner, making it difficult to lift and move objects. Over time, the symptoms become more severe and the muscles gradually atrophy and degenerate. It becomes increasingly difficult to move your body, and you can’t chew, swallow, or speak properly. As the atrophied muscles cause the neurons that carry signals to the brain to degenerate, the brain and the rest of the body are unable to interact. In other words, the body’s nervous system completely breaks down and you can’t act as you think. In the later stages of the disease, the respiratory muscles weaken, making it increasingly difficult to breathe, and a combination of problems eventually leads to death.
So why does ALS happen? Unfortunately, the cause of ALS is not yet clearly understood. At the moment, it’s still being speculated and studied through various hypotheses. Some of the most common theories are that it”s caused by a mutated gene, an excess of glutamate, or a viral infection.
Let’s look at the genetic hypothesis first. Studies have shown that about 10% of people with ALS have familial ALS due to a genetic problem. About 20% of them have a mutation on chromosome 21. In addition, it has been reported that a total of eight genes can be mutated to cause ALS, meaning that the mutated genes can selectively damage motor neurons, leading to the disease.
In addition to gene mutations, there is also research suggesting that an excess of glutamate may play a role in the development of the disease. The hypothesis is that the amount of glutamate that transmits signals from the central nervous system to the motor nerves becomes too much, and the motor nerves are eventually destroyed. In other words, too much glutamate acts like a toxic substance and destroys cells. Other hypotheses include viral infections that destroy cells, or the accumulation of heavy metals that cause neuronal disruption. However, this has yet to be conclusively proven.
So, what can we do to treat the disease? Unfortunately, there is currently no cure for ALS. As a result, it’s a notoriously incurable disease, with an average life expectancy of only three to four years. Currently, the only options are to slow down the progression of the disease as much as possible, which includes medication, physical therapy, and respiratory therapy.
The medication is a drug called Rilutec. As we mentioned earlier, it”s used to prevent glutamic acid, which is thought to be one of the causes of ALS, from destroying nerve cells. However, it can’t save nerves that have already been destroyed, so it won’t return you to your pre-disease state, only slow down the rate at which motor neurons are destroyed.
In addition, it’s important to slow down the physical disability as much as possible and learn how to replace weakened muscles with stronger ones. Physical therapy, occupational therapy, respiratory therapy, etc. can be used to slow down physical degeneration as much as possible. However, these treatments don”t directly cure the disease, they only slow down its progression or make it less uncomfortable.
These treatments can last for years, which is a huge financial burden. Because it’s an incurable disease and very difficult to manage, hospitals demand high fees, so some patients decide that they can’t afford it, and instead opt to do some rehabilitation at home. In the United States, various charitable organizations have raised funds to establish nursing homes for ALS patients in various states, and various volunteers help with their care and treatment. In Korea, however, there are no such facilities, and the treatment of people with the disease is often poor. As the number of people with ALS is increasing every year, there are increasing calls for Korea to support various welfare benefits like the United States.
In this article, we’ve discussed the symptoms, causes, and treatments of ALS. As you can see, it’s a scary disease that causes a lot of suffering for both patients and their families. As many experts agree, better treatment technologies, better benefits, and more public awareness would go a long way toward helping those affected by the disease.
