1 in 300

1 in 300 is the lifetime risk of anyone developing ALS

This 1/300 statistic is important. Why? Well, there are many reasons why. This post addresses two of them.

    1. Public perception of ALS

The standard ALS prevalency statistic that people read 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. This perception causes individuals displaying ALS symptoms, to 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. ALS is also a very private disease. It involves the lose of autonomy and the lost of every skill needed to interact with the general public. That paired with how fast the disease progresses is just enough to silence, confuse, suffer, and then disappear. The individual’s legacy will live on and the love for that person will persist, but the disease burden and the overwhelmingly rapid disease progression is enough to recede from the public view and then cease to exist. 

    2. Medical community awareness of ALS

ALS is notoriously missed in a primary care physician setting. Why is this? For starters, doctors are pattern recognizers. Depending on their practice, whether it is neurology, dermatology, or optometry, they are trained to look for patterns and ask questions or 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. A solution to this failure to recognize ALS early on is by increasing awareness of the prevalence of ALS. The medical community can do this by utilizing the 1 in 300 statistic. This would, in theory, 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 a primary care physician 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. 

Resources

ALISON GOWLAND1 , SARAH OPIE-MARTIN1 , KIRSTEN M. SCOTT2 , ASHLEY R. JONES1 , PUJA R. MEHTA1,3 , CHRISTINE J. BATTS4 ,CATHY M. ELLIS3 , P. NIGEL LEIGH5 , CHRISTOPHER E. SHAW6 , JEMEEN SREEDHARAN1 AND AMMAR AL-CHALABI1, (2019) Predicting the Future of ALS,