Facts You Should Know

En español

  • ALS is not contagious.
  • Although the life expectancy of a person with ALS averages about two to five years from the time of diagnosis, this disease is variable, and many people can live with the disease for five years and more. More than half of all people with ALS live more than three years after diagnosis.
  • Once ALS starts it almost always progresses, eventually taking away the ability to walk, dress, write, speak, swallow, and breathe and shortening the life span.  How fast and in what order this occurs is very different from person to person.  While the average survival time is 3 years, about twenty percent of people with ALS live five years, 10 percent will survive ten years and five percent will live 20 years or more.
  • Progression is not always a straight line in an individual either.  It is not uncommon to have periods lasting weeks to months where there is very little or no loss of function.  There are even very rare examples in which there is significant improvement and recovery of lost function.  These ALS "arrests" and "reversals" are unfortunately usually transient.  Less than 1% of patients with ALS will have significant improvement in function lasting 12 months or more.  
  • Approximately 6,400 people in the U.S. are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people, and it is estimated that more than 20,000 Americans may be living with ALS at any given time.
  • ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries and can affect anyone. 
  • Military veterans are approximately twice as likely to develop ALS. 
  • The onset of ALS often involves muscle weakness or stiffness as early symptoms. Progression of weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and later breathing generally follows.
  • There can be significant costs for medical care, equipment and home health caregiving later in the disease. It is important to be knowledgeable about your health plan coverage and other programs for which you may be eligible, including Social Security Disability, Medicare, Medical and Veteran Affairs benefits.
  • Riluzole, the first treatment to alter the course of ALS, was approved by the FDA in late 1995. This antiglutamate drug was shown scientifically to prolong the life of persons with ALS by at least a few months. More recent studies suggest Riluzole slows the progress of ALS, allowing the patient more time in the higher functioning states when their function is less affected by ALS. Click here for more information on the drug. Many private health plans cover the cost of Riluzole. Further information on Riluzole coverage through Medicare Prescription Drug Benefit can be found in the Advocacy pages of this website.

    Reports from three separate patient databases described long range experience with Riluzole. All three reports suggest a trend of increasing survival with Riluzole over time. More studies that are double-blind and controlled are needed to confirm these database observations. The trend appears to indicate that longer periods of time than those used in the Riluzole clinical trials may be needed to see the long-term survival advantage of the drug. An interesting observation was that despite the fact that the Irish government provides Riluzole free of charge to people in Ireland with ALS, only two-thirds of the patients registered in the Ireland national ALS database reported taking Riluzole.

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