Back in 2014, you couldn’t open social media without seeing the viral Ice Bucket Challenge campaign, which aimed to raise money and awareness for amyotrophic lateral sclerosis. It was successful on both fronts — far more people know the condition exists, and it raised so much money (around $200 million) that it has already resulted in medical breakthroughs.
Stephen Hawking, the world-renowned physicist who recently died at the age of 76, was one of the most famous people with ALS — another, of course, being baseball player Lou Gehrig, whose name is synonymous with the condition.
So what exactly is ALS?
According to the Mayo Clinic, ALS is a progressive neurological disease that slowly causes nerve cells to break down and die, eventually causing disability because of severe weakening of muscles. While it typically starts out affecting movement of limbs, over time it makes it difficult and later impossible to eat, speak or breathe.
Thankfully, ALS typically does not impact a person’s ability to think, as was clearly the case with Hawking, who made countless scientific contributions as the condition advanced.
An estimated 20,000 to 30,000 people have ALS in the United States, with around 5,000 new cases diagnosed every year according to the Centers for Disease Control.
What are the symptoms of ALS?
Like many conditions, the early signs and symptoms of ALS include many seemingly normal and harmless effects, like frequently tripping and falling, hand weakness or clumsiness and muscle cramps and twitching in your arms and shoulders. However, there are other symptoms you are less likely to experience in your everyday life, including difficulty walking or doing your normal daily activities; weakness in your leg, feet or ankles; slurred speech or trouble swallowing; and difficulty holding your head up or keeping good posture.
What causes ALS?
Scientists are still in the process of figuring out the causes of ALS but at this point know that between 5 and 10 percent of cases are hereditary according to the Mayo Clinic. Unfortunately, there is also no known cure.
There are certain risk factors that can increase a person’s chances of getting ALS. They include age (it is most common in people between the ages of 40 and 60) as well as environmental factors like smoking, exposure to harmful toxins (though more research is needed to determine specific substances) and military service (though no specific reason for this has been pinpointed yet).
And despite the fact that some of the most well-known people with ALS are men, the condition is actually more common in women prior to the age of 65 (after that point, the diagnostic rate evens out). Furthermore, smoking appears to be more of a trigger for ALS in women, especially after menopause.
Most people tend to live between two and five years after symptoms develop, which makes the fact that Hawking lived with ALS for more than 50 years even more remarkable.
How is ALS diagnosed & treated?
Because the early signs and symptoms can look like other neurological conditions, ALS can be difficult to diagnose, so doctors tend to run a battery of tests in order to rule out the other diseases. These tests can include MRI, spinal taps, blood and urine tests, a muscle biopsy, a nerve conduction study or an electromyogram.
As mentioned above, there is no cure for ALS, but there are treatments that can help slow down the progression of the nerve damage and make the person more comfortable and may help improve their quality of life.