About Amyotrophic Lateral Sclerosis (ALS)

Highlights

  • ALS also known as Lou Gehrig's disease, is a motor neuron disease.
  • ALS is rare, though slightly more common in men than women.
  • The disease affects the nerve cells in both the upper and lower parts of the body. It causes the muscles to become weak and leads to paralysis.
  • No one knows what causes most cases of ALS.
Female using a laptop

Overview

ALS is a disease that affects the nerve cells in both the upper and lower parts of the body. This disease causes the nerve cells to stop working and die. The nerves lose the ability to trigger specific muscles, which causes the muscles to become weak and leads to paralysis.

No one knows what causes most cases of ALS. Scientists have been studying many factors that could be linked with ALS, such as heredity and environmental exposures. Other scientists have looked at diet or injury. No cause has been found for most cases of ALS. In the future, scientists may find that many factors together cause ALS.

Health studies have not found definite environmental factors that are linked with either ALS or other MNDs. Some studies suggested a possible link with exposure to heavy metals (e.g., lead and mercury). Other studies suggested a link with exposure to trace elements, solvents, radiation, and agricultural chemicals. No confirmed link was found with infections, diet, physical activity, and injury.

Although no one knows for sure, reports suggest less than 30,000 people in the United States have ALS; every year about 5,000 people are told by their doctor that they have the disease. Because no records on ALS have been kept throughout the country, it is hard to estimate the number of ALS cases in the United States. CDC does not require doctors to report ALS cases.

How it impacts lives

  • ALS is slightly more common in men than women, but recent studies suggest that this difference is decreasing over time. Familial ALS is equally common in men and women.
  • ALS is age related; most people with ALS find out they have it when they are between 55 and 75 years of age.
  • Most people live from 2 to 5 years after symptoms develop. How long a person lives with ALS seems to be related to age; people who are younger when the illness starts live slightly longer.
  • About 5–10% of ALS cases occur within families. This is called familial ALS and it means that two or more people in a family have ALS. These cases are caused by several inherited factors. The most common is in a gene called SOD1.
  • Familial ALS is found equally among men and women. People with familial ALS usually do not fare as well as a person with ALS who are not related, and typically live only one to two years after symptoms appear.

Resources

  • The National Institutes of Health, a government agency, has a list of clinical trials. Go to the "Clinical Trials" web site to find a list of federally and privately supported clinical trials in the United States and around the world. ClinicalTrials.gov gives you information about a trial's purpose, who may take part, locations, and phone numbers for more details. Use the "ALS Clinical Trials" web site for clinical trials specifically related to ALS.
  • CDC's Epidemic Intelligence Service investigates urgent public health problems. Learn more about Epi-Aids.
  • Find your state health department
  • Please visit our Resource Links page for other ALS related websites.
  • Questions? Contact us at National ALS Registry.