10 Facts about ALS

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Amyotrophic lateral sclerosis (ALS) a progressive neurodegenerative disease that affects the nerve cells in the brain and the spinal cord. In a healthy individual the motor neurons from the brain reach out to the spinal cord to help us move and function effectively.  Patients diagnosed with ALS however, suffer from the progressive degeneration of the motor neurons over time, gradually reducing the ability of the brain to initiate and control muscle movement, until such a time that the ability to control movement is lost completely. 

Most people who develop ALS are between the ages of 40 and 70, with an average age of diagnosis being around 55 years old. It’s estimated that between 5 and 10 percent of those diagnosed will have inherited the disease (familial ALS), while a far larger number of patients develop sporadic ALS with no previous genetic markers present. 

Here Are 10 More Fascinating Facts About ALS That You May Not Know:

1.ALS is also called Lou Gehrig’s disease, after the New York Yankee’s first baseman who was diagnosed with the disease at the tender age of 36.  He held the record for the most consecutive games played by any player for over 60 years, and his fans affectionately referred to him as the “Iron Man”. 

2. For many patients, the very first symptoms of ALS appear in either the hands or the legs.  Because of the specific placement of the symptoms, this is referred to as “limb-onset ALS.” Others will experience speech or swallowing difficulties, in a condition referred to as “bulbar-onset ALS.”  Some other common symptoms of ALS are twitching and cramping of muscles, as well as weakness and fatigue, tripping and falling, dropping things, uncontrollable periods of laughing and crying, and slurred or thick speech.

3. ALS can strike at any time, but it most commonly strikes between the ages of 50 and 75, but can affect individuals as young as 40 or occasionally even younger too. The incidence of the disease in children is very, very rare.

4. It’s estimated that between 14,000 and 15,000 Americans have ALS and it appears to affect more men than women. Every 90 minutes someone in the U.S. is diagnosed with ALS and it is estimated that at any given time, 1 to 7 out of every 100,000 people will have been diagnosed with the condition. 

5. World famous physicist Stephen Hawking was first diagnosed with ALS at age 21 and was told he would not live to see his 25th birthday.  He went on to live to the grand old age of 76 and defied all the odds by becoming “The World’s Greatest Living Scientist”. 

6. Patients with ALS gradually lose the ability to move their arms, legs, and bodies. As time goes on they will also be unable to breathe without the assistance of a ventilator.  They do not, however, lose the ability to see, taste, hear, or recognize touch, and the disease usually has no significant impact on their ability to think or reason.

7. The biggest breakthrough so far in the field of ALS research is the discovery of a gene that is linked to the onset of the disease. This gene makes a specific protein called superoxide dismutase 1 (SOD-1), whose function it is to clean cell metabolism waste products known as free radicals.  At least 200 mutations in the SOD1 gene have been found to cause amyotrophic lateral sclerosis. Being able to identify them, can help with better treatment and potentially even a cure. There are also more than 150 potential treatments being looked at in the U.S.A alone.

8. The ALS Ice Bucket Challenge was a social media campaign that set out to raise money for ALS research, and to help raise awareness of the disease. Since July 2014, the ALS Association reported that the campaign raised over $115 million worldwide.

9. Research is currently being undertaken to ascertain whether or not there is a link between brain injuries and the onset of ALS. A National Football League-funded study compared the brains of 12 deceased professional athletes (who all had experienced repeated concussions while playing) with those of the 12 patients who had died from ALS, and found that abnormalities in the brains and spinal cords were very similar. Other studies have shown that there is a greater risk of developing ALS among people who have served in the military

Research suggests that there is a link between the military and the onset of ALS

10. In both the UK and Australia, ALS is referred to as Motor Neuron Disease (MND), while in France, it is called Maladie de Charcot, after the French doctor Jean-Martin Charcot who first discovered the illness in 1869.

Living with ALS

ALS is a fatal condition that there is currently no cure for. However, there are drugs on the market which may be used to help slow the progression of the disease to a limited degree. 

Statistics show that half of those with ALS live at least three years after diagnosis, 25 percent for at least five years, and up to 10 percent 10 years or more.