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How Common is ALS?

Discovering that your loved one has been diagnosed with Amyotrophic lateral sclerosis (ALS) can be an overwhelming experience, however, knowing that you are not the only one can help to clear the journey ahead. Here is what you should know. 

Global Prevalence

Prevalence is defined as the proportion of individuals within a population, who are affected by the disease at a specific time. Globally, it's estimated that as many as 4.42 people per 100,000 are diagnosed with ALS each year. That translates to approximately 345,000 people worldwide living with the disease at any given time.

U.S. Statistics

In the United States, approximately 5,000 new cases of ALS are diagnosed annually. This means about 14 new cases each day. It's estimated that as many as 20,000 Americans live with ALS at any given time. Additionally, Massachusetts General is at the forefront of ALS research, collecting statistics and providing valuable data for the state of Massachusetts. Based on the collected data, it is estimated that roughly 250 to 350 people in Massachusetts are diagnosed with ALS.

Age Statistics

The majority of ALS patients are diagnosed between the ages of 40 and 70, with the average age of diagnosis being around 55 years old. Approximately 60% of ALS cases occur between ages 55 and 65.

Gender Statistics

The statistics indicate that men are slightly more vulnerable to developing ALS. Men are about 1.5 times more likely to develop ALS than women. However, this disparity decreases with age, and by the age of 70, men and women are equally likely to be diagnosed.

Familial vs. Sporadic ALS

Approximately 90-95% of all ALS cases are sporadic, meaning the disease occurs with no clear familial link. The remaining 5-10% are familial cases, where more than one family member is affected by the disease.

While the numbers can provide a quantitative understanding, it's essential to remember that each person's experience with ALS is unique. If a family member has been diagnosed, it is always recommended to seek counseling and do regular checkups. While ALS is relatively rare it is still important to stress that individuals affected by it are not alone.

Global variation in prevalence and incidence of amyotrophic lateral sclerosis: a systematic review and meta-analysis
CDC: Amyotrophic lateral sclerosis
Who Gets ALS?
Familial Amyotrophic Lateral Sclerosis (FALS) and Genetic Testing

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