Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig's disease or classical motor neuron disease, is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles. In ALS, both the upper motor neurons and the lower motor neurons degenerate or die, ceasing to send messages to muscles. Unable to function, the muscles gradually weaken, waste away, and twitch. Eventually the ability of the brain to start and control voluntary movement is lost. Symptoms are usually first noticed in the arms and hands, legs, or swallowing muscles. Muscle weakness and atrophy occur on both sides of the body. Individuals with ALS lose their strength and the ability to move their arms and legs, and to hold the body upright. When muscles in the diaphragm and chest wall fail to function properly, individuals lose the ability to breathe without ventilatory support. The disease does not affect a person's ability to see, smell, taste, hear, or recognize touch. Although the disease does not usually impair a person's mind or personality, several recent studies suggest that some people with ALS may develop cognitive problems involving word fluency, decision-making, and memory. The cause of ALS is not known, and scientists do not yet know why ALS strikes some people and not others.
No cure has yet been found for ALS. However, the drug riluzole--the only prescribed drug approved by the Food and Drug Administration (FDA) to treat ALS--prolongs life by 2-3 months but does not relieve symptoms. The FDA has also approved the NeuRx Diaphragm Pacing System, which uses implanted electrodes and a battery pack to cause the diaphragm (breathing muscle) to contract, to help certain individuals who have ALS and breathing problems an average benefit of 16 months before onset of severe respiratory failure. Other treatments are designed to relieve symptoms and improve the quality of life for people with ALS. Drugs are available to help individuals with spasticity, pain, panic attacks, and depression. Physical therapy, occupational therapy, and rehabilitation may help to prevent joint immobility and slow muscle weakness and atrophy. Individuals with ALS may eventually consider forms of mechanical ventilation (respirators).
Regardless of the part of the body first affected by the disease, muscle weakness and atrophy spread to other parts of the body as the disease progresses. Individuals have increasing problems with moving, swallowing, and speaking or forming words. Eventually people with ALS will not be able to stand or walk, get in or out of bed on their own, or use their hands and arms. In later stages of the disease, individuals have difficulty breathing as the muscles of the respiratory system weaken. Although ventilation support can ease problems with breathing and prolong survival, it does not affect the progression of ALS. Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. However, about 10 percent of those individuals with ALS survive for 10 or more years.
The National Institute of Neurological Disorders and Stroke (NINDS) conducts research in its laboratories at the National Institutes of Health (NIH) and also supports additional research through grants to major medical institutions across the country. The goals of this research are to find the cause or causes of ALS, understand the mechanisms involved in the progression of the disease, and develop effective treatments.
National ALS Registry
Both the NINDS and the Centers of Disease Control and Prevention (CDC) are committed to studies of disease patterns or risk factors among persons with ALS in order to better understand the causes of ALS, the mechanisms involved in the progression of the disease, and to develop effective treatments. In keeping with this goal, the CDC has launched the National ALS Registry, a program to collect, manage and analyze data about persons with ALS. The Registry includes data from national databases as well as de-identified information provided by persons with ALS. Persons living with ALS who choose to participate can add their information to the Registry by clicking the button below.
1275 K Street, N.W.
Washington, DC 20005
Les Turner ALS Foundation
5550 W. Touhy Avenue
Skokie, IL 60077-3254
Tel: 888-ALS-1107 847-679-3311
Muscular Dystrophy Association
National Office - 222 S. Riverside Plaza
Chicago, IL 60606
New York, NY 10032
Tel: 212-420-7382 800-603-0270
ALS Therapy Development Institute
300 Technology Square
Cambridge, MA 02139
P.O. Box 5755
Berkeley, CA 94705
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892
NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient's medical history.
All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.
Last Modified February 1, 2016