Emma Gagnon

Mr. Hellmers

English 1201

31 April 2022

ALS Research

“In the US, 1 to 3 new cases of ALS per 100,000 people are diagnosed every year; this is

believed to be the same worldwide” (Mayo Clinic). Amyotrophic lateral sclerosis, or ALS, is a

disease that affects many people each year. ALS is a progressive disease that affects the nerve

cells in the brain and spinal cord. While ALS doesn't affect as many people as other diseases do,

there needs to be more research done on ALS because there are a lot of symptoms with no way

to stop them, there is a low life expectancy for patients with ALS, it is unknown how ALS occurs

in most patients, and there is no cure for ALS. More research on ALS can help scientists learn

more about this disease and hopefully solve some of these problems.

ALS is commonly known by multiple names. According to the Muscular Dystrophy

Association, ALS was first identified in the 19th century by Jean-Martin Charcot. ALS stands for

amyotrophic lateral sclerosis, but it is most commonly known as ALS or Lou Gehrig's disease.

Lou Gehrig was a famous New York Yankee baseball player. When Lou Gehrig found out he

had ALS, it ruined his baseball career. Gehrig, unfortunately, died in 1941 and for many years

people referred to ALS as Lou Gehrig's disease (Muscular Dystrophy Association). As Als

Association explains, the scientific name, amyotrophic lateral sclerosis, comes from the Greek

language. “A” means no, “myo'' stands for muscle, and “trophic” means nourishment. When you

put these words together to get amyotrophic, it means “no muscle nourishment.” “Lateral” is the
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area in the spinal cord where the nerve cells that control muscle movement are located.

“Sclerosis” refers to where the scarring occurs on the spinal cord when the nerve cells degenerate

(Als Association). This explanation shows that when the nerve cells die, the muscles in the spinal

cord do not get nourishment and this leads to scarring where the nerve cells were. ALS is the

most commonly used name for this disease, but people will also refer to it as Lou Gehrig’s

disease or amyotrophic lateral sclerosis.

Many people have never heard of ALS or do not know what it is. “ALS is a disease that

affects the nerve cells in both the upper and lower parts of the body. This disease causes the

nerve cells to stop working and die” (“National Amyotrophic Lateral Sclerosis (ALS) Registry”).

This quote explains that the nerve cells stop working, which causes the voluntary muscles to no

longer work. ALS is a progressive disease which means that it is not possible to stop the

symptoms from arriving. The symptoms that come with ALS happen when the nerve cells die, so

there is no getting the nerve cells back. ALS is also a disease that affects every patient

differently. According to the Als Association, “What differs most for every person is how fast

and in what order symptoms and progression occur…Progression isn’t always a straight line in

an individual, either. It’s common to have periods lasting weeks to months with very little or no

loss of function.” ALS is a disease that is hard to predict due to its wide range of variety from the

speed of progression to the symptoms and in what order they occur. If there was more research

done on ALS, it could be easier to predict what symptoms a patient will have, when they will

have them, and how fast the disease will progress.

ALS has many symptoms that come from when the nerve cells on the spinal cord

degenerate. This can cause symptoms such as difficulty walking, weakness in arms and legs,
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clumsiness, slurred speech, trouble swallowing, muscle cramps, and a lot more (Mayo Clinic).

These symptoms can make it hard for patients to do daily activities such as eating, taking

showers, drinking, and many more. Since ALS is a progressive disease, the symptoms get worse

over time: “Eventually, ALS weakens muscles, including muscles used for breathing, until they

become paralyzed. Unable to swallow, patients with ALS may aspirate or inhale food or saliva

into their lungs. In fact, most people with ALS die of respiratory failure” (“ALS”). By the end of

their life with ALS, most patients can not breathe on their own and they become either paralyzed

or very close to being paralyzed. According to the Mayo Clinic, ALS can cause many

complications. One main complication is breathing problems. Patients may need a device to help

them breathe when it gets too bad. Another main complication is having speaking problems. In

the beginning, it may just be hard to understand the patient when they talk, but when the speech

problems get too bad, many people use technology to help them communicate. One more

problem that could occur is having eating difficulties. It is a challenge for ALS patients to

swallow, so many patients use feeding tubes to avoid any illness or injuries (Mayo Clinic).

Fortunately, only the voluntary muscles are affected by ALS. This means that the involuntary

muscles such as the heartbeat, bladder, tract and bowel, and others are not affected. Sensations

such as vision, touch, hearing, smell, and taste also remain unaffected (Muscular Dystrophy

Association). ALS has many terrible symptoms that only get worse over time.

There is a low life expectancy for patients with ALS. Many people believe that only older

people can get ALS, but that is not necessarily true. “ALS usually strikes in late middle age (the

late 50s is average) or later, although it can occur in young adults as well as in very elderly

people. Some forms of ALS have their onset in youth” (Muscular Dystrophy Association). It is
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most common for people to get ALS while they are in their fifties, but there are multiple cases

where people get it either younger or older than that. As the “National Amyotrophic Lateral

Sclerosis (ALS) Registry” explains, the average time that a person lives with ALS is three to five

years after they start to develop symptoms, however, when younger people are diagnosed with

ALS, they usually live longer. This explanation shows that even though there is a low life

expectancy for patients with ALS, the younger that a person is when they are diagnosed, the

longer they are expected to live. Although there is a low average life expectancy, everyone that

has ALS is different. Als Association describes, “while the average survival time is three years,

about 20% of people with ALS live five years, 10% survive 10 years and 5% live 20 years or

longer.” ALS is a disease that is different among every person, so even though most people only

live for a short amount of time, there is a wide range of possible life expectancies. This wide

range usually depends on what age the patient is. If more research was done on ALS, there could

be discoveries that lead to helping patients live longer and making the average life expectancy

longer than three to five years.

It is unknown how most cases of ALS appear. ALS can run in families, but that is not

common. According to Als Association, “About 90% of ALS cases occur without any known

family history or genetic cause. The remaining 5-10% of ALS cases – known as familial ALS

(FALS) – are inherited through a mutated gene with a known connection to the disease.” A small

amount of ALS cases are familial, but how do the other 90 percent of patients get ALS? No one

knows for sure what causes non-familial ALS, but as Mayo Clinic describes, several possible

environmental factors that could be the cause. Smoking is the most likely environmental risk for

ALS. Environmental toxin exposure is another possible effect. Many studies have been
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conducted, but there is no single chemical that has been consistent with ALS. One other possible

environmental cause is being in the military. It is not yet proven why, but people who have been

in the military have a higher risk of developing ALS. It could be due to metal exposure, chemical

exposure, injuries, trauma, infections, or another reason (Mayo Clinic). Most cases of ALS are

unclear as to how they developed it and there is a lot unknown about the environmental risks.

More research on ALS can be useful for finding out how it occurs and how to stop people from

getting this disease.

The percentage of men and women that have been diagnosed with ALS is different. As

“ALS” states, “men are about one-and-a-half times more likely to have the disease than women.”

Men are more likely to be diagnosed with ALS, but looking at just cases of familial ALS, the

percentage is equal among men and women (“National Amyotrophic Lateral Sclerosis (ALS)

Registry”). This quotation explains that only cases that happen because of an environmental

cause are more common in men. Men are also only more likely to get ALS at a certain age.

According to the Als Association, “ALS is 20% more common in men than women. However,

with increasing age, the incidence of ALS is more equal between men and women.” This

quotation shows that men are more likely than women to receive ALS at a younger age. It is

proven that men are more likely to be diagnosed with ALS than women, but why does this

happen? Is there a possible cause that makes men more likely to develop ALS? More research on

ALS can help answer some of these important questions.

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This graph is from volume 50 of Neuroepidemiology. The graph shows that the most common

age people get ALS is 55-64 years old. It shows how men are more likely to get ALS at almost

every age, but the amount of men and women who are diagnosed get closer together from ages

65 to 85+ (Shenghan et al).

Unfortunately, there is currently no known cure for ALS. Although there is no cure, there

are medications that patients can take to help them deal with symptoms and help them live

longer. “ALS” explains that riluzole is a drug that can slow the progression of ALS, but it can get

expensive so not everyone can afford it. Some other drugs that are used for treatment include
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baclofen, diazepam, gabapentin, trihexyphenidyl, and amitriptyline. These medications can help

with spasticity, which is muscle tightness, they can help control pain, and can help patients

swallow their saliva (“ALS”). There are other treatments as well that help with symptoms of

ALS. Muscular Dystrophy Association states, “Proper management of symptoms, and proactive

use of medical interventions and equipment, can make a positive difference in day-to-day living

and potentially may lengthen life.” This quotation shows that there are medical devices that can

help control symptoms to make life easier for patients. There are also many types of therapies

that can help patients learn how to live with their new symptoms. These types of therapies

include breathing care, physical therapy, occupational therapy, speech therapy, nutritional

support, psychological support, social support, and more (Mayo Clinic). There are drugs, medical

devices, and different types of therapies that help make patients’ lives’ easier, but there is still no

cure. More research on ALS can hopefully help the researchers find a cure so no one has to try to

live with ALS again.

More research on ALS, and every other disease, is extremely important. No one can

argue that more research on any disease is not necessary. However, someone might say that other

diseases that affect more people, like cancer, require more donations and studies than a disease

like ALS that affects fewer people. “About Cancer” describes, “In 2020, an estimated 1,806,590

new cases of cancer will be diagnosed in the United States and 606,520 people will die from the

disease.” As “ALS” explains, “About 30,000 patients in this country have the disease and about

5,000 are diagnosed with ALS every year.” Comparing these two quotes, cancer affects many

more people than ALS does. However, in most cases, cancer is treatable and there are plenty of

medications and treatments that can be used to get rid of cancer. ALS on the other hand is a fatal
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disease. As stated before, there is no cure for ALS and not too many treatment options. Cancer

research receives many grants and donations every day to help continue the research. In 2019 the

available funds totaled 6.1 billion dollars, an increase of three percent from the previous year

(“About Cancer”). ALS received 415.9 million dollars and a lot of that was thanks to the ice

bucket challenge in 2014 (Als Association). ALS does not receive nearly as much money as

cancer does for research. ALS should be given more money and grants so they can perform more

research and scientific studies.

While ALS doesn't affect as many people as other diseases do, there needs to be more

research done on ALS. There are a lot of symptoms and no way to stop them, there is a low life

expectancy for patients that have been diagnosed with ALS, it is unknown how ALS occurs in

most patients, and there is no cure for ALS. There is a lot unknown about ALS like how patients

get it, how to stop the symptoms from coming, if there is a cure or not, and so much more. More

research for ALS can hopefully solve these concerns and answer some of the unanswered

questions.
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Works Cited

“About Cancer.” National Cancer Institute, www.cancer.gov.

Als Association, 2022. www.als.org.

“ALS.” UCSF Health, 2022, www.ucsfhealth.org/conditions/als.

“Amyotrophic Lateral Sclerosis (ALS).” Mayo Clinic, 2022, www.mayoclinic.org/diseases-

conditions/amyotrophic-lateral-sclerosis/symptoms-causes/syc-20354022.

“Amyotrophic Lateral Sclerosis (ALS).” Muscular Dystrophy Association, 2022,

www.mda.org/disease/amyotrophic-lateral-sclerosis/research.

“National Amyotrophic Lateral Sclerosis (ALS) Registry.” Centers for Disease Control and

Prevention, 18 January 2022, www.cdc.gov/als/ALSResearchNotificationClinicalTrials

Studies_Active.html?CDC_AA_refVal=https%3A%2F%2Fwww.cdc.gov%2Fals

%2FALSResearchNotificationClinicalTrialsStudies.html.

Zhou, Shenghan, et al. "Using the Capture-Recapture Method to Estimate the Incidence of

Amyotrophic Lateral Sclerosis in Beijing, China." Neuroepidemiology, vol. 50, no. 1-2, Mar.

2018, pp. 29+. Gale Academic OneFile, link.gale.com/apps/doc/A588839085/AONE?u=

anon~ cb735088&sid=googleScholar&xid=7eb5cd20.