If you spend much time on social media websites like Facebook, you've probably seen at least one friend take the "Ice Bucket Challenge." As much as the game can raise awareness and funds for ALS, it may not spread many facts about the disease.
The Ice Bucket Challenge is a fundraising game in which people take videos of themselves dumping cold water or ice on their heads. They then nominate the next person to do so. The "challenge" is to either drench yourself or donate money to ALS, although most people appear to be doing both — to the tune of $31.5 million as of Aug. 20, according to an ALS Association press release.
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, is a fast-progressing neurological disease that attacks nerve cells that control voluntary muscles. It is fatal, usually within a few years of diagnosis, and affects as many as 30,000 Americans. Doctors diagnose about 5,600 new cases each year in the US, according to the ALS Association.
The following are five things you need to know about ALS.
ALS Is Not Contagious
You could hold hands with an ALS patient and not contract the disease. You could share food or drinks, use the same razor and breathe the same air because the disease is not contagious.
As far as medical professionals know, ALS occurs at random in most cases — 90 to 95 percent, according to estimates from the National Institute of Neurological Disorders and Stroke (NINDS).
ALS can affect anyone, no matter their gender, race or financial status.
Little Is Known About ALS Risk Factors
Scientists do not know what causes ALS, but they have a few theories.
The NINDS associated mutations in the SOD1 gene with an increased risk for the disease, but, since then, researchers have identified many more genetic mutations that could raise ALS risk — and how exactly they raise that risk is unclear.
Other research has suggested that certain types of dementia may increase ALS risk.
Researchers have considered many potential risk factors for ALS, including environmental, occupational and genetic factors — but they have not reached definitive conclusions.
"Pesticide and fertilizer exposure was associated with ALS in a small study recently but given the small sample size and the lack of direct exposure measures these results suggest that residential exposure factors warrant close attention in studies examining risk factors of ALS," said Lavanya Nagineni, MD, of the Baylor All Saints Medical Center at Fort Worth, TX, in an interview with dailyRx News. "Smoking, occupational exposure to metals, dust/fibers/fumes/gas and radiation, physical activity were not associated with ALS in a small study."
What scientists do know is that, although ALS can affect anyone, white males and those in their 60s are more likely to have the disease than other groups.
ALS Is Hard to Diagnose
It isn't always immediately obvious when someone has ALS. At first, symptoms can be so minor that many patients think they are just regular muscle pain or soreness.
Early symptoms of ALS include cramps, stiff muscles, weakness in the arms or legs, and difficulty with swallowing or chewing, according to the NINDS.
These seemingly minor symptoms eventually spread to other parts of the body and intensify. Most deaths from ALS are caused by respiratory failure due to muscles essential to breathing shutting down.
There Is More Than One Kind of ALS
ALS comes in several forms, including sporadic and familial.
Sporadic ALS is the most common form in the US, accounting for between 90 and 95 percent of cases, according to the ALS Association. This type can affect anyone, and its cause is unknown.
Familial ALS is inherited from family members. According to ALS Association estimates, only 5 to 10 percent of ALS patients have familial ALS. Those who do have it have a 50 percent chance of passing down the responsible gene mutation, which can lead to ALS in their children.
Medicines Can Prolong Life Expectancy
ALS may be fatal, but that doesn't mean it has no treatments.
In 1995, the US Food and Drug Administration approved riluzole (brand name Rilutek) for ALS treatment. Since then, the medicine has been studied and tested numerous times.
Riluzole appears to prolong patients' lives and slow the progression of the disease, which means ALS patients may spend more time in more coherent mental states, according to the ALS Association website.
Riluzole has proven to increase the life expectancy of ALS patients — which is between two and five years on average — by at least a few months, sometimes more. Some ALS patients have lived with the disease for more than 20 years, the ALS Association notes.