There is a 1 in 300 is the lifetime risk that you will develop ALS.
(This post was written in June 2020 and is still relevant today.)
Why is this 1 in 300 statistic is important? Keep reading.
1. Public perception of ALS
The standard ALS prevalency statistic the internet provides is that every 5 people out of 100,000 people have ALS at any given time in the U.S. This is makes ALS seem underwhelmingly rare and plays a role in why individuals displaying ALS symptoms, don’t realize they have ALS and instead, rationalize their symptoms and delay doctor visits until their disease has taken a significant toll.
Have you every wondered why so many people have had family members or friends affected by ALS and you didn’t know about it until you had ALS hit close to home?
Several factors affect this phenomenon, one being the short lifespan of an ALS patient (2-5 years on average). Just because there are few people living with ALS in our community right now does not mean that people have not been affected by it, they just aren’t here to raise awareness of your disease.
Another variable is ALS is a very private disease. It involves the loss of autonomy which discourages interactions with the general public. This tendency to remain private, paired with how fast the disease progresses causes individuals to disappear.
The individual’s legacy will live on and the love for that person will persist, but the disease burden on society is minimal and thus awareness is low.
2. Diagnostic Delay
ALS is notoriously missed in a primary care physician (PCP) setting. On average, there is 1 year time period from the time of symptom onset to an ALS diagnosis. Why is this? Researches have puzzled over this diagnostic delay for years. One theory is that doctors are pattern recognizers. Depending on their practice, whether it is neurology, dermatology, optometry, etc., they are trained to look for patterns and ask questions. They then run tests to confirm or deny their suspicions. Unless you are an emergency room physician and trained to expect the worst, rare diseases are not the first diagnosis doctors jump to. ALS also begins insidiously and with symptoms that do not scream “ALS” such as tripping, or tongue swelling.
A solution to this failure to recognize ALS early on is by increasing awareness of the prevalence of ALS. By doing so, ALS would not be a last resort diagnosis, but rather a potential candidate from the start. The medical community can do this by developing sophisticated diagnostic biomarkers, utilizing AI models to data mine initial symptoms from patient records, and/or utilizing the 1 in 300 statistic. Given a sophisticated biomarker is not yet widely utilized, and the AI has not yet been introduced by Big Pharma, MOFF is doing our part by advertising the 1 in 300 likelihood of developing ALS. This statistic, in theory, would increase a doctor’s index of suspicion towards the disease. Index of suspicion is defined as: “The level of suspicion that a disease or condition is the underlying diagnosis based on the available findings in a patient.” Just maybe, the 1 in 300 lifetime risk will allow the PCP to think that their patient’s hand weakness is not simply a weakness due to a localized sports injury, but maybe a more global issue with neurological underpinnings.