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 prevalence statistic that people hear about ALS is that every 5 people out of 100,000 will get ALS. This is makes ALS seem abstract to the point that when a person actually has ALS, they do not seek medical attention or entertain the concept until their disease has already taken a toll on their bodies. Also, have you every wondered why so many people have had family members or friends affected by ALS and you didn’t know about it? That is because the person with ALS dies. This is a heavy realization. Each person with ALS lives on average 2-5 years. 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.

    2. Medical community awareness of ALS

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. Therefore, if we increase awareness of the prevalence of ALS and use the 1 in 300 statistic, we could 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 a sports injury, but maybe has neurological origins.

Resources

Index of suspicion definition
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,