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More Info, Data & Statistics on ALS 

ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.

”Amyotrophic” comes from the Greek language. “A” means no. “Myo” refers to muscle.  “Trophic” means nourishment. So, amyotrophic means “no muscle nourishment,” and when a muscle has no nourishment, it “atrophies” or wastes away.

“Lateral” identifies the areas in a person’s spinal cord where portions of the nerve cells that signal and control the muscles are located.

As this area degenerates, it leads to scarring or hardening (“sclerosis”) in the region.

Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their demise.

When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. When voluntary muscle action is progressively affected, people may lose the ability to speak, eat, move and breathe.

The motor nerves affected when you have ALS are the motor neurons that provide voluntary movements and muscle control. Examples of voluntary movements are making the effort to reach for a smartphone or step off a curb. These actions are controlled by the muscles in the arms and legs.

French neurologist Jean-Martin Charcot discovered ALS in 1869. While ALS can affect anyone, anywhere, at any time, there are two different ways cases are categorized.

  • For about 90% of all cases, there’s no known family history of the disease or presence of a genetic mutation linked to ALS.
  • For 5-10% of all cases, there’s a known family history of the disease. This is often called familial ALS.

In families with familial ALS, there is a 50% chance each offspring will inherit the gene mutation and may develop the disease.

More Facts About ALS

  • More than 5,000 people are diagnosed with ALS per year
  • 2-5 years is the average life expectancy
  • 10% of cases are inherited through a mutated gene
  • 90% of cases occur without a family history
  • Every 90 minutes in the US, someone is diagnosed with ALS & every 90 minutes, someone passes away of ALS
  • There is no cure for ALS
  • The worldwide number of people living with ALS is expected to rise more than 40% in the next decade
  • ALS is a neurological disease that affects the nerve cells that control voluntary muscle movement (the muscles we have conscious control over)
  • The disease is progressive, meaning the symptoms get worse over time
  • Individuals affected lose their strength and the ability to control those voluntary muscle movements which include speaking, eating, mobility, and even breathing
  • The life expectancy of those affected is usually 3 to 5 years from when the symptoms first appear
  • However, about 10 percent of people with ALS survive for 10 or more years
  • For unknown reasons, military veterans are more likely to be diagnosed with the disease than the general public.

In addition, people living with ALS may experience a better quality of life by participating in patient support groups and seeking treatment at an established ALS Multidisciplinary Clinic (or ALS Center of Excellence) where some of the top ALS experts in the world focus on the early diagnosis and treatment of ALS. Such Centers provide a national standard of best-practice multidisciplinary care to help manage the symptoms of the disease and help people living with ALS live on their own terms for as long as possible.

According to many published papers & clinical studies, those people living with ALS that are treated at an ALS  Multidisciplinary Clinic may have prolonged survival and improved quality of life.

WHO IS AT RISK FOR ALS

Every 90 minutes, someone is diagnosed with ALS, and someone passes away from it.

Most people who develop ALS are between the ages of 40 and 70, with an average age of 55 at the time of diagnosis. However, cases of the disease do occur in people in their twenties and thirties.

ALS is 20% more common in men than women. However, with increasing age, the incidence of ALS is more equal between men and women.

About 90% of ALS cases occur without any known family history or genetic cause. The remaining 10% of ALS cases are inherited through a mutated gene with a known connection to the disease.

For unknown reasons, military veterans are more likely to be diagnosed with the disease than the general public.

Some famous individuals you may know of who have been diagnosed with ALS include:

Baseball great Lou Gehrig

Physicist Stephen Hawking

“SpongeBob SquarePants” creator Stephen Hillenburg

“Sesame Street” creator Jon Stone

U.S. Senator Jacob Javits

MLB player Jim “Catfish” Hunter

NFL football player Steve McMichael (Chicago Bears)

NFL football player Steve Gleason (New Orleans Saints)

NFL football player Dwight Clark (San Francisco 49ers)

NFL football player Tim Shaw (Tennessee Titans)

NFL football player O.J. Brigance (Baltimore Ravens)

ALS Signs, Symptoms and Diagnosis

Signs & Symptoms

ALS is a disease that typically involves a gradual onset. The initial symptoms of ALS can be quite varied. One person may have trouble grasping a pen or lifting a coffee cup, while another may experience a change in vocal pitch when speaking.

The progression rate of ALS can be quite variable, as well. Although the mean survival time with ALS is two to five years, some people live five years, 10 years or even longer.

Symptoms can begin in the muscles that control speech and swallowing or in the hands, arms, legs or feet. Not all people with ALS experience the same symptoms or the same sequences or patterns of progression. However, progressive muscle weakness and paralysis are universally experienced.

A gradual onset of progressive muscle weakness – which is generally painless – is the most common initial symptom in ALS. Other early symptoms vary but can include tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches and uncontrollable periods of laughing or crying.

When the breathing muscles become affected, people with the disease will ultimately need permanent ventilatory support to assist with breathing.

Since ALS attacks only motor neurons, the senses of sight, touch, hearing, taste and smell aren’t affected. For many people, muscles of the eyes and bladder generally are not affected.

Diagnosis

ALS is a difficult disease to diagnose. There is no one test or procedure to ultimately establish the diagnosis of ALS. It’s only through a clinical examination and series of diagnostic tests, often ruling out other diseases that mimic ALS, that a diagnosis can be established.

A comprehensive diagnostic workup includes most, if not all, of the following procedures:

  • Electrodiagnostic tests, including electromyography (EMG) and nerve conduction velocity (NCV)
  • Blood and urine studies, including high resolution serum protein electrophoresis, thyroid and parathyroid hormone levels and 24-hour urine collection for heavy metals
  • Spinal tap
  • X-rays, including magnetic resonance imaging (MRI)
  • Myelogram of cervical spine
  • Muscle and/or nerve biopsy
  • A thorough neurological examination

These tests are done at the discretion of the physician, usually based on the results of other diagnostic tests and the physical examination. Several diseases have some of the same symptoms as ALS, and most of those conditions are treatable. 

Lou Gehrig’s Disease

Why Is ALS Sometimes Referred To As “Lou Gehrig’s Disease”?

Lou Gehrig played professional baseball with the New York Yankees for 17 years and received the moniker “The Iron Horse” due to his ability to play baseball despite suffering from a variety of injuries.

Born in New York City to the son of German immigrants, Heinrich and Christina Gehrig, Gehrig attended Columbia University on a football scholarship to study engineering, yet he also played the sport for which he is best known during his tenure at the Ivy League school.

A baseball scout signed Gehrig to the Yankees in 1923 due to his remarkable hitting skills.  He held various positions on the team until his retirement, including shortstop and outfielder; however, many know him best as the Yankees’ first baseman.

Gehrig garnered many achievements in his career. He hit 493 home runs; held the record for most grand slams in a career (23) until 2013; and established a record for playing 2,130 consecutive professional baseball games. The Yankees also made him the first athlete to have a jersey number retired. 

Gehrig was diagnosed with ALS on his 36th birthday during a visit with his wife Eleanor to the Mayo Clinic in Rochester, Minnesota, on June 19, 1939. Prior to his diagnosis, Gehrig noticed several of the disease’s symptoms while playing on the field, including a loss of strength, slipping, falling and loss of coordination.

Shortly after his diagnosis, Gehrig chose to retire from baseball. The Yankees designated July 4, 1939, “Lou Gehrig Appreciation Day” at Yankee Stadium, and honored its former first baseman for his sportsman-like behavior and dedication to the game. 

On that day, nearly 62,000 fans listened to Gehrig give his famous speech where he deemed himself “the luckiest man on the face of the earth.”

On June 2, 2021, Major League Baseball (MLB) launched the inaugural Lou Gehrig Day across the MLB network. This day is intended to honor the famed “Iron Horse,” and raise nationwide awareness of ALS and engage more people in the fight against this insidious disease.