It has been a couple years now since the Ice Bucket Challenge took us by storm. Still, many of the people who participated in the social media phenomenon know very little about the videos’ arch nemesis: amyotrophic lateral sclerosis. ALS, as it’s typically called, is a degenerative disease that affects nerves in the brain and spinal cord. The death of motor neurons leads to a lack of muscle movement and then the muscles start wasting away. This leads to a loss of movement, and eventually the ability to even swallow or breathe.
Yet even with this basic knowledge of the disease, there is still mystery surrounding it. Here are seven things you probably didn’t know about ALS.
1. Stephen Hawking’s case is very rare
One of the most famous people with ALS is world-renowned theoretical physicist Stephen Hawking. Interestingly enough, Hawking’s story is not indicative of the common ALS case.
As the ALS Association explains, the average lifespan for someone diagnosed with the disorder is two to five years. Only 20% make it past the five year mark, and only about 10% survive a decade. Hawking, now 75 years old, has survived for more than five decades.
Amyotrophic lateral sclerosis is also commonly diagnosed between the ages of 40 and 70. Hawking, on the other hand, was diagnosed when he was in his 20s.
2. It’s more uncomfortable than painful
Despite the debilitating nature of this condition, it doesn’t reportedly cause feelings of unbearable pain. Martina Wiedau, M.D., director of the ALS Clinic and Research Center at UCLA, told Prevention the “loss of muscle bulk and functionality” causes more discomfort than focused pain. This comes from sitting or lying in one position for too long due to the lack of muscle mobility, Wiedau explains.
3. It’s difficult to diagnose
ALS is very difficult to catch early or to quickly diagnose, Mayo Clinic informs us. This is because its symptoms are so similar to those of other neurological diseases. There are, however, a series of tests that can help determine if you have the disease. Some tests are more commonplace, like MRIs, while others are more extreme and painful, like an electromyogram or a spinal tap.
Even if a patient is diagnosed with ALS, there is no known cure. WebMD tells us there are two drugs that help slow down the progression of the disease, but neither can undo the damage already caused.
4. Your genetics might matter
In a select few cases, there have been signs that ALS has hereditary components. There have also been studies that have found that new or rare genetic mutations could affect the likelihood of someone getting the disease. Unfortunately, there’s no foolproof way of predicting whether someone will get ALS. In fact, Wiedau told Prevention, “It’s not clear why the person developed it, and it’s probably due to multiple factors that we may never fully understand.”
5. It’s common in military vets
Because it’s so difficult to determine what factors lead to ALS, it’s even more head-scratching to see that the disease is so common among military veterans. Back in 2004, WebMD reported that men who served in the military are 60% more likely to develop it. But studies have yet to determine why this phenomenon occurs, especially since the branch of the military and the location in which veterans have served don’t seem to be factors.
There are a couple commonalities researchers have noticed, though, such as exposure to lead or pesticides in foreign countries. But, again, none of that has been proven.
6. Symptoms — what you should look for
Despite being difficult to diagnose, there are symptoms that may be early signs of ALS. Mayo Clinic notes that difficulty performing daily activities due to muscle weakness, including difficulty walking and tripping, are early signs. Weakness in your hands and muscle twitches in your arms are also symptoms of ALS. Some of the more alarming symptoms to be aware of are difficulty talking and swallowing, having trouble holding your head up, and struggling to maintain good posture.
7. Patients are eager to help research efforts
The push to find a cure for ALS continues, and it isn’t just doctors and scientists who are working to find it. Although the Ice Bucket Challenge was just one instance, it’s a good example of how much those with the disease are eager to raise awareness and help find a cure.
In 2012, for example, ABC News reported on one ALS patient who went so far as to lead his own drug trial, and even got other patients to participate. And ALS patients very frequently take part in other trials all over the world to help potentially speed up the process of finding a cure.