In 2023, ALS United Connecticut worked with 400 people diagnosed with ALS. Most people who develop ALS are between the ages of 45 and 75, with an average age of 55 at the time of diagnosis. However, cases of the disease do occur in people younger than 45. ALS is slightly more common in men than women.
About 90-95% of ALS cases occur without any known family history or genetic cause. The remaining 5-10% of ALS cases are inherited through a mutated gene with a known connection to the disease. It is important to be genetically tested for one of the existing ALS genes, as there may be trials and medications available that specifically target the identified genes.
Although the direct causes of ALS are unknown, research suggests the disease is caused by interactions between an individual's genetic risk factors and their cumulative lifetime of exposures to various environmental factors. Exposures that are associated with developing ALS (other than genetic mutations) include heavy metals like lead or mercury, organic chemicals like pesticides and solvents, electric shock, physical shock, physical injuries (especially head injuries) and smoking. Overall these effects are small, but may have a cumulative effect. A range of other exposures have weaker evidence supporting them and include participation in professional sports, military service and viral infections*.
ALS is considered a service-related disease for any military veteran, and extensive health coverage is available for them through Veteran's Affairs.
The life expectancy of all people affected with ALS is highly variable, but most will live 2-4 years after diagnosis. Twenty percent live five years or more; up to ten percent will live more than ten years. There is some evidence that people with ALS are living longer, at least partially due to clinical management interventions, FDA-approved medications and possibly other compounds and drugs currently under investigation.
The most famous individuals who have been diagnosed with ALS include baseball player Lou Gehrig, astrophysicist Stephen Hawking and jazz singer/composer Charles Mingus. A list of notable people with motor neuron disease.
*Information is from 'Identification of risk factors associated with onset and progression of amyotrophic lateral sclerosis using systemic review and meta-analysis' by Ming-Dong Wang, Julian Little, James Gomes, Neil R. Cashman and Daniel Krewski in the July 2017 NeruoToxicology Journal.
People are diagnosed each year
Of cases have no genetic cause
Age range most people develop ALS