In this blog post, we will look at how the Ice Bucket Challenge has affected raising awareness and providing practical help for ALS.
In 2014, you could often see videos of celebrities dousing themselves with ice water on YouTube. This was a campaign called the “Ice Bucket Challenge,” in which participants nominate three people and then have 24 hours to douse themselves with ice water or donate $100 to the ALS Association. This campaign was launched with the aim of experiencing the suffering of ALS patients for a moment and showing them some interest. The public responded that the campaign’s purpose was very good. However, there was also a growing view that the campaign was becoming a one-off event, as it was being transformed into various promotional and entertainment activities. As a result, there have been calls for specific and accurate information to be provided to help the public better understand ALS and make the campaign more meaningful.
According to global statistics, two out of every 100,000 people are diagnosed with ALS each year, and more than 1,500 people in Korea are suffering from ALS. Moreover, as the number of patients is increasing, there is a growing argument that the disease should no longer be treated lightly and that society as a whole should show warm concern for it. Therefore, in this article, we would like to provide specific information so that the public can have a more accurate and detailed understanding of ALS.
What is Lou Gehrig’s disease? This is a terrible, incurable disease in which motor neurons are destroyed, making it impossible to move freely throughout the body, and eventually, even breathing becomes impossible, leading to death. It is said that more than half of patients die within five years of onset. The official medical name for this disease is amyotrophic lateral sclerosis. Lou Gehrig, the fourth baseman for the New York Yankees in the Major League Baseball, suffered from this disease and ended his career and died, which became known around the world and was called Lou Gehrig’s disease. In addition, the fact that Stephen Hawking, a world-renowned astrophysicist, also suffered from this disease has attracted even more attention.
As the official name of Lou Gehrig’s disease, amyotrophic lateral sclerosis, suggests, this disease is a disease in which the motor neurons responsible for our body’s voluntary movements are damaged, causing the motor neurons to gradually die, muscles to atrophy, and nerves to become stiff as if they were rocks. Simply put, we will not be able to move the muscles of our whole body at our will. In the early stages, the muscles in the hands, fingers, and legs gradually weaken and thin, causing symptoms of discomfort when lifting or moving objects. As time goes by, the symptoms become more severe, and the muscles gradually atrophy and degenerate. It becomes increasingly difficult to move the body, and it becomes impossible to properly chew, swallow, and speak. As the muscles atrophy, the neurons that transmit signals from the brain degenerate, preventing the brain and the rest of the body from interacting. In other words, the body’s nervous system completely fails, preventing it from acting as it should. As the disease progresses to its final stage, the respiratory muscles weaken, making breathing increasingly difficult, and a combination of other problems eventually leads to death.
Then, why does ALS occur? Unfortunately, the cause of ALS has not yet been clearly identified. Currently, we are in the stage of estimating and researching through various hypotheses. Representative hypotheses include the onset of the disease due to a mutated gene, glutamic acid excess, and viral infection.
First, let’s take a look at the genetic hypothesis. Studies have shown that about 10% of ALS patients have familial ALS due to genetic issues. About 20% of these patients have mutations in chromosome 21. In addition, it has been reported that a total of eight genes can cause ALS by causing mutations. In other words, the mutant gene selectively damages motor cells, which can cause ALS.
In addition to gene mutations, research is being conducted that glutamic acid excess may be an important cause of ALS. This hypothesis is that the excessive amount of glutamic acid that transmits signals from the central nervous system to the motor nerves eventually destroys the motor nerves. In other words, an excessive amount of glutamic acid acts like a toxic substance and destroys cells. In addition, there is a hypothesis that Lou Gehrig’s disease occurs when cells are destroyed by a viral infection or when heavy metals accumulate and cause nerve disorders. However, this has not yet been proven.
So, how should Lou Gehrig’s disease be treated? Unfortunately, there is currently no way to cure Lou Gehrig’s disease. For this reason, the disease is known as a notorious incurable disease, and the average life expectancy of patients is only three to four years. Currently, the only way to slow down the progression of the disease is through drug treatment, physical therapy, and respiratory therapy.
Drug treatment uses a drug called “rilutek.” As mentioned earlier, rilutek is used to prevent the destruction of nerve cells by glutamic acid, which is thought to be one of the causes of ALS. However, since nerves that have already been destroyed cannot be revived, it cannot return to the state before the disease, and it is only effective in slowing down the destruction of motor neurons.
It is also important to learn how to delay physical disability as much as possible and replace weakened muscles with strong muscles. Physical therapy, occupational therapy, and respiratory therapy are used in combination to delay physical degeneration as much as possible. However, these treatments do not directly improve the disease, but only slow down its progression or alleviate discomfort to some extent.
Such treatment lasts for years and is very expensive. Because it is an incurable disease and very difficult to manage, hospitals charge high fees for it. Therefore, some patients, judging that the treatment is difficult, only undergo some rehabilitation treatment at home and replace the treatment. In the United States, various charities raise funds to establish nursing homes for ALS patients in several states, and various volunteers help with their treatment and care. However, there are no such facilities in Korea, and the treatment of ALS patients is also poor. As the number of ALS patients is increasing every year, there are growing calls for Korea to provide various welfare benefits like the United States.
So far, we have looked at the symptoms, causes, and treatments of ALS. As you can see from the above, ALS is a terrible disease that causes great suffering for both patients and their families. As many experts say, if treatment technology and welfare benefits are well established as soon as possible and public interest is further gathered, it will be a great help to ALS patients.
