Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease that kills/damages cells in the brain and the spinal column. The cells that are especially impacted are motor neurons, leading to involuntary muscle spasms. Eventually as the disease progresses control over voluntary muscles begins to decrease, eventually voluntary muscle control is lost. The disease will even claim the person’s ability to live by themselves, feed themselves and ultimately their ability to breathe for themselves. While the person’s physical abilities decrease exponentially the thinking capability of the person remains unimpeded, keeping their mind as sharp as it was previously.
ALS is a disease that affects around 30,000 people in the United States, a relatively rare neurodegenerative disease. Unfortunately global statistics on this disease are much harder to find, a quick search of the Internet leads me to the statistic that 30,000 people in the US are impacted. It is approximately as common as Huntington’s Disease, a degenerative disease that was prominently featured in the TV show House M.D.. While both diseases are incredibly damaging to families and people it is merely a small fraction of the number of people that are killed in the US (and the world) each year. In the United States 2 per 100,000 deaths are by (or are related to) ALS; while 3.5 per 100,000 deaths are related to guns/gun violence (I only use this as a framing device).
This is not meant to belittle the impact of ALS on society, it is merely meant to show how few people it impacts. Until recently I hadn’t heard of the ALS Ice Bucket Challenge (I freely admit I live under a rock when it comes to popular culture), but it surprised me. It’s raising money and awareness for a disease that is devastating and painful to watch a loved one go through; but raising awareness for a disease that impacts a mere 0.01% of the population in the US. When I quickly Googled how much money the Ice Bucket Challenge raised to research a cure for ALS over $15,000,000 (fifteen million) has been raised since it first began.
This begs the question to me: Is such a relatively rare disease deserving of the newfound public fame when diseases like Creutzfeldt-Jakob disease (CJD), a prion disease, impacts 10 people per 100,000 across the globe? In the state of Minnesota alone 13 people per 100,000 (the US as a whole is approximately 9.6 per 10,000) die from CJD with death occurring on average six months after the onset of the disease. While ALS is completely deserving of being researched and funded to the best of their ability there are also other diseases, diseases few people have heard of that impact more people than ALS and are currently without any effective treatments; like CJD.
I will end this blog post with a humble request: next time when the Ice Bucket Challenge scrolls across social media (and I guarantee it will) just remember there are also other diseases that are just as worthy, if not more so, than ALS.
ALS: is it worthy of the public limelight?
