If you’re one of the millions who are on social media every day, then you most probably have heard about or joined in the Ice Bucket Challenge – a worldwide effort in the hopes of raising money for research cost on Amyotrophic Lateral Sclerosis. This was done by either pouring cold water with ice on yourself, donating $100, or both. Families, friends, coworkers, and all kinds of individuals joined in on the challenge.
However, the viral marketing campaign’s success would not be completely attained if people did not acquire more comprehensive knowledge and understanding of ALS, a condition that affects more than 30,000 Americans and has killed nearly 6,000 people yearly.
Instead of presenting facts and other studies here, which you might have already read, we have listed below five misconceptions that we often have about ALS. If we are suffering from the disease, or our loved one is, we are often so caught up with finding out how to relieve ourselves of the condition that we believe everything we hear. So here are things that ALS is NOT.
- ALS does not only involve motor activity alone. Sadly, physicians and patients themselves often suggest this misconception. They assume that the affectation for ALS is solely motor, that as an individual deteriorates, his mental function remains the same. This is untrue, as proven by a new study that showed approximately 30% of patients developed mild to moderate cognitive impairment, while about 10% developed severe dementia. Initially, ALS starts with weakness in the hand or foot and is sometimes mistaken as carpal tunnel syndrome, only that the former is not painful and the latter is.
Over time, months or years, the weakness advances from one side of the hand to the other, until all extremities become weak. The muscles of the mouth and throat are also weakened, thus the patient will eventually have difficulty breathing, chewing, and swallowing. This hallmark is what makes ALS deadly, as the patient will soon need a respirator to live, but the weakness will not stop.
- ALS is not a result of Lyme and other infectious diseases. Initially, the presentation of ALS can look like a curable illness, such as Lyme disease, which is caused by a tick bite. However, this disease can be alleviated by antibiotics, while ALS cannot. Also, neurologists can clearly isolate the two conditions through clinical tests and a diagnostic workup.
Moreover, no single study has suggested that ALS is caused primarily by an infection. In fact, according to neurologists’ records, 90% of ALS occurs sporadically, or just out of the blue, with an unknown cause. The remaining 10% is attributed to genetics.
- ALS is not a result of too much sports or sports gone bad. This information spread when some data suggesting that there was a higher likelihood for football players to develop ALS, although there is much research to be done for this to be accepted as a fact. Studies should be done on other contact sports to further support this claim. Incidentally, Lou Gehrig, a former athlete, suffered from ALS (hence the disease is also called Lou Gehrig’s disease).
After that, another athlete gave more fame to ALS being caused by sports when Steve Gleason got the same illness. He has become an inspiration to other athletes as he has shown how people like him can fight ALS by customizing his home and using different tools to help him cope and communicate. He also did the ice bucket challenge naked.
- ALS is not an illness of seniors only. In fact, the onset of the disease is 54 – and that’s not old. Lou Gehrig was diagnosed in his mid-30s and died at a young age of 38. Perhaps the idea that it is usually seen among the old people is because they are the ones who are inflicted with degenerative conditions like Alzheimer’s, Parkinson’s, and yes, ALS. But the condition is not exclusive to seniors.
ALS has a large age of onset range, which is from one’s teenage years to as old as he can get. Only one out of 800 males and one out of 1000 females in the United States will die from ALS.
- ALS is not an untreatable disease. Just because there have been very few drugs available in the market for ALS, it doesn’t necessarily mean that no one cares. There is only one drug that is approved by the FDA to be administered to ALS patients. The name is riluzole and it was formulated in 1995. Unfortunately, it has only provided moderate outcomes. Since then, a lot of clinical trials on new medications have been attempted in the hopes of achieving decreased progression of the disease but to no avail.
Despite the impediments, pharmaceutical companies are increasingly eager to conduct studies and clinical trials to find a better solution for curing ALS. It resulted in many interesting discoveries about the disease and exploring new tools to observe and study it. And one of the most vital discoveries is that of stem cell therapy.
The Ice Bucket Challenge made waves in social media, and this certainly helped increase awareness about ALS, including donations from different organizations. On the contrary, there were also some who criticized the challenge, saying that it was only a waste of money and water and that the disease does not need that much attention. Nevertheless, that challenge was only the first step, and a big step at that, to a better and clearer understanding of ALS.