The Facts

Every 90 minutes, someone is diagnosed with ALS, also known as Lou Gehrig's disease or Motor Neuron Disease (MND). It is a progressive and fatal neurodegenerative disease that causes muscle weakness, difficulty breathing and swallowing, and paralysis while leaving the senses intact. Most people survive two to five years after their diagnosis, with an estimated 30,000 people in the U.S. and 450,000 worldwide living with the disease. While ALS is often considered a mid-to late-life disease, ALS affects people of all ages. It can affect anyone, anywhere. Currently, there is no effective treatment or cure.

FAQs

How common is ALS?

ALS affects 2 out of every 100,000 people worldwide. Someone is diagnosed with the disease every 90 minutes. The vast majority are over the age of 40, but younger people can be affected by ALS.

Can you get ALS in your 20s or 30s?

Yes. While the average age of diagnosis in 55, six percent of those diagnosed are under age 40. 17 percent of people living with ALS began noticing symptoms before the age of 40, but were not diagnosed until later. (Patients Like Me)

If my parent or family member has ALS am I more likely to get ALS?

It depends. ALS can be passed down in certain cases, but only 10 percent of cases are so-called “hereditary,” or inherited, ALS. The remaining 90 percent are referred to as “sporadic” ALS. While there are some factors, such as military service, that seem to increase someone's chances of developing sporadic ALS, the cause remains unknown.

What are the early symptoms of ALS?

Most people with ALS first feel muscle cramps, spasms or twitching in one of their arms or legs. Other signs include weakness in the hands and feet or loss of balance. This form of the disease is called limb-onset ALS.

About 25 percent of people with ALS first have trouble talking clearly and begin to slur their words. This form of the disease is called bulbar-onset ALS.

What's the prognosis once you've been diagnosed with ALS?

Most people live about three to five years after they experience their first signs of disease, with one in ten people surviving at least 10 years.

Is there a cure for ALS?

There are currently no known effective cures or treatments to stop disease progression of ALS. ALS is a complex disease which varies from person to person and far more research is necessary to discover effective treatments for each person living with ALS.

Researchers at the ALS Therapy Development Institute (ALS TDI) are working hard each day to change that. They aim to do this by identifying, testing, and developing promising new treatments and by learning more about the disease through their Precision Medicine Program, the first and largest study of its kind in ALS.

Want to talk?

Email us at youngfaces@als.net.