Top 5 ALS Facts

What makes ALS so terrifying is the fact that there is still so much that we do not understand about it. Case in point… we don’t have a clear idea as to how or why it develops. Only about 5 to 10% of all ALS cases are of the familial variety, meaning that a genetic predisposition played a role. The other 90 to 95% of all ALS cases fall under the category of “Sporadic ALS” - so named because it is incredibly difficult to predict. Most often manifesting when people are in their 50s or 60s, ALS can be identified through symptoms including difficulty breathing, muscular weakness or cramping, as well problems with speech and swallowing.

#4: The Mind Remains Sharp While the Body Degenerates

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Imagine losing control of your body - watching as once simple tasks become increasingly difficult, and eventually, downright impossible. While degenerative conditions such as dementia and alzheimer’s affect the mind, those diagnosed with ALS experience no such cognitive impairment, meaning that as their body transitions into a state of complete paralysis, their brains remain fully active, alert and aware of their surroundings. For many, this is the scariest part of an ALS diagnosis - knowing that they will trapped inside their bodies even after they’ve lost all motor function. Despite remaining sharp however, the physical toll of the disease ultimately shortens the lifespan, with most patients passing away within two to five years of a diagnosis.

#3: It’s Common and Can Affect Anyone

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While it most commonly develops in individuals in their 50s or 60s, ALS is not a particularly discerning. People of all ages, from all walks of life, can be diagnosed. Lifestyle seemingly plays little part, although, for some unknown reason, military veterans have been found to be twice as likely to develop it. As one of the most common neurodegenerative conditions known to man, it’s little wonder it has garnered so much attention. According to the ALS Association, an estimated 6,000 Americans are diagnosed yearly, but due to the drastically shortened lifespan, there are only an average of 20,000 individuals living with the condition in the states at any given time.

#2: A Number of High Profile Figures Have Been Diagnosed

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You may not be familiar with ALS, but what about its other name - Lou Gehrig’s Disease? The condition first came to mainstream attention when iconic New York Yankees baseball player Lou Gehrig was diagnosed in 1939, tragically passing away from the condition just two years later. Though his name would go on to become synonymous with the disease, he’s far from the only famous figure to have experienced it. Diagnosed with the condition at the uncommonly young age of 21, one legendary physicist has defied all odds, living with the disease for decades. That man… is Stephen Hawking. NFL player Steve Gleason and SpongeBob Squarepants creator Stephen Hillenburg are just two other big names on this long list.

#1: There’s No Cure… YET

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Despite serious research efforts, a cure or effective treatment for ALS continues to evade the scientific community. To date, the best available option is a drug known as Riluzole. However, even in best-case scenarios, it can only extend life expectancy by two to three months. Due to these limitations, for the most part, treatment tends to focus on quality of life and comfort more than anything else. However, with greater public awareness and funding behind it, the future seems hopeful. We understand the condition better than ever before, and are learning more every year, with research into stem cells has proven particularly promising.