Amyotrophic Lateral Sclerosis (ALS)

Treatment

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).  

Prognosis

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.

Research

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 RegistryBoth 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.

Organizations