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Amyotrophic Lateral Sclerosis
(a-my-o-TROE-fik LAT-ur-ul skluh-ROE-sis)

aka: ALS

WHAT IS ALS?

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Amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease, is a swiftly advancing and inevitably fatal neurological disorder. This condition targets the body's nerve cells, referred to as "neurons," responsible for governing voluntary muscle movement, impacting areas such as the arms, legs, and face. ALS is categorized under motor neuron diseases, characterized by the gradual degeneration and demise of these motor neurons.

 

As motor neurons undergo degeneration, the communication between muscles and the brain weakens over time, resulting in gradual muscle weakening, atrophy, and subtle twitches known as "fasciculations." Ultimately, the brain loses its capacity to initiate and regulate voluntary movement. In cases where the muscles in the diaphragm and chest wall fail, individuals depend on ventilatory support for breathing, with respiratory failure being the primary cause of death—typically occurring within 3 to 5 years of symptom onset. Nevertheless, approximately 10 percent of ALS patients defy this prognosis, surviving for a decade or more and sustaining a robust quality of life through technological aids and support.​

WHO GETS ALS?

  • ALS is the most common motor neuron disease, affecting all races and ethnicities equally.

  • Global ALS rates are mostly unknown, but in Europe, it's around 2.2 cases per 100,000 annually.

  • In the U.S., 5,600+ new ALS cases each year, with up to 30,000 currently affected and two deaths per 100,000 annually.

  • 90-95% of ALS cases occur randomly, with no identified risk factors; no family history in sporadic cases.

  • Inherited ALS accounts for 5-10% of cases, often requiring only one parent with the disease-causing gene.

  • Over a dozen genes mutations can cause familial (hereditary) ALS.

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What are symptoms?

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  • ALS symptoms, often subtle initially, include fasciculations, cramps, muscle weakness, and speech difficulties.

  • Hands or arms are commonly affected, impacting tasks like writing; legs' involvement leads to walking issues.

  • Disease progression causes widespread muscle weakness, swallowing problems, and speech difficulties.

  • Individuals eventually lose the ability to stand, walk, and perform daily activities, facing breathing difficulties.

  • Cognitive abilities remain intact initially, but some may experience memory issues or dementia over time.

  • Health care professionals should explain the disease course and available treatments. Ventilatory support becomes crucial in later stages, with an increased risk of pneumonia. 

A few statistics.

  • 1 in 300 people will be diagnosed with ALS.

  • Every 90 minutes someone in the U.S. is diagnosed with ALS.

  • ALS is a brutal, terminal disease.

  • As ALS progresses, the brain begins to lose its ability to communicate with the body’s muscles, leaving the person unable to walk, to talk, and eventually, to breathe.

  • ALS takes aways independence & dignity.

  • ALS is a fatal disease and people are generally given a life expectancy of 2 to 5 years after diagnosis.

  • Living with ALS can be financially, emotionally, and mentally burdensome. The financial challenges are staggering, with the cost of living with ALS exceeding $200,000 per year, far beyond what insurance typically covers.

  • About 90% of ALS cases occur without any known family history or genetic cause.

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