10 Interesting Facts about ALS

10 Interesting Facts about ALS

ALS, short for Amyotrophic Lateral Sclerosis, is a condition that attacks a person’s motor neurons, or nerves, which control all the muscle movements in the body. This involves everything from the kicking of your legs to swallowing a drink. If these nerves cease in relaying messaging from your brain to your spinal cord, they no longer can communicate with the muscles. From there, the muscles weaken to the point that they are unable to work any longer.

Although most people know about ALS from the ALS Ice Bucket Challenge that debuted in the summer of 2014, it is a disease that many people know very little about. To help you to learn more about this condition and to help you be more aware and active in the fight towards a cure, here are 10 interesting facts about ALS that you may not have previously known:

Who Is Affected by ALS?

ALS tends to affect men with a slightly higher frequency than it does women – however, the difference is even greater in those under the age of 50. In the 30s and 40s, men find themselves affected by ALS around 3 or 4 times more than women. The majority of people who are diagnosed with ALS receive their diagnoses between the ages of 40 and 70.

How Many People are Affected by ALS?

ALS affects approximately 30,000 people who live in the United States. Each year, another 5,600 patients are diagnosed with the condition.

What ALS does not Affect

ALS typically does not have an impact on a person’s primary five senses (smell, sight, hearing, touch, and taste). People with ALS typically do not find that they have notable changes in their cognitive abilities and intelligence. However, some people do develop dementia as a result of their condition. What this results in, in most cases, is a person who is extremely aware of what is going on and what is happening to them but find themselves unable to react or respond in the ways that we are accustomed to.

Why People are Affected by ALS

Around 10% of ALS cases appear to be hereditary or genetic. That leaves the other 90%, however, to be sporadic. For those 90%, no one is able to say what the trigger or cause is, and these cases are not linked to any risk factors that we are able to identify or have discovered. However, when it comes to the hereditary cases, we are able to identify the gene responsible for the condition around 70% of the time. There is a lot of ongoing research to help explain all the genes that lead to hereditary ALS.

ALS infographic

Facts and figures related to ALS

How Quickly does ALS Affect People?

ALS is a disease that, in most cases, progresses quite rapidly. This happens almost immediately after significant symptoms make themselves known. Patients of ALS typically experience respiratory failure, a result of their breathing muscles deteriorating, within 3-5 years of the condition’s onset. However, 10% of ALS victims manage to survive for 10 years or even more after being diagnosed with the condition. The path the disease will take and how it will specifically affect a particular individual are highly variable and unable to be predicted.

Diagnosing ALS

There is not yet any test that is able to diagnose ALS. Instead, doctors diagnose ALS patients by examining their symptoms and excluding other possible causes of these symptoms. Through the process of elimination, doctors are then able to consider a person a patient with ALS. On average, the delay between onset of symptoms and diagnosis is 12 months. However, by increasing awareness of the condition and seeing a specialist sooner once symptoms make themselves known, a correct diagnosis can be made quicker and therapy and supportive care can start sooner.

The Path to a Cure

Because the vast majority of cases are sporadic, we cannot identify the cause – and therefore, we have been unable to find a cure. Many organisations that study and research ALS hope to find a cure. The hope is that one will be found in the near future, or a treatment to slow down the disease will at least be uncovered. This would make it more like a chronic disease, such as the majority of cases of multiple sclerosis.

Living with ALS

While there is no cure for ALS, doctors still do everything they can to help those with ALS manage their condition and live their lives. Some medications are available that aim to slow the progression of ALS. Riluzole is currently the FDA’s only approved medication for ALS treatment. While it slows the progression of the disease, it is only able to extend the survival rate by months, not years.

As a result of limited medication options, the primary thing that treatment revolves around is managing the symptoms ALS brings about. This includes reducing muscle cramps and improving their fatigue. Those with ALS often meet with occupational therapists, physical therapists, and speech therapists to better their quality of life. They use methods such as exercise programs, alternative forms of communication, and home modifications to do this. Offering quality end-of-life care is especially important for a patient suffering from ALS.

Famous Faces

Lou Gehrig, best known for earning a spot in the Baseball Hall of Fame, is probably the most famous person with ALS. Many people still refer to the condition as Lou Gehrig’s disease because of its most famous sufferer. Other public figures suffer from ALS too, including physicist Stephen Hawking, who was diagnosed at age 21 and has astoundingly survived and is now in his 70s. Musician Led Belly, former NFL player Steve Gleason, actor Michael Zaslow, and the Ravens Director of Player Development OJ Brigance, all also suffer from ALS.

A Variety of Diseases

Genetic studies have revealed that is it likely that ALS is not a single disease, but rather, a combination of similar and related diseases that bring about the same result in the end. This could be one potential reason why the medical community has been unable to find an effective treatment for so long. It is likely that a single treatment will not be effective for every patient.