Facts
About ALS
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The onset of ALS is insidious with muscle
weakness or stiffness as early symptoms. Inevitable progression of
wasting and paralysis of the muscles of the limbs and trunk as well as
those that control vital functions such as speech, swallowing and
breathing follows.
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In most cases, mental faculties are not
affected. Also, ALS is not contagious.
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It is estimated that ALS is responsible for
nearly two deaths per hundred thousand population annually. More people
die every year of ALS than of Huntington's disease or multiple
sclerosis.
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A little over 5,000 people in the U.S. are
diagnosed with ALS each year. The incidence of ALS (two per 100,000
people) is five times higher than Huntington's disease and about equal
to multiple sclerosis. It is estimated that as many as 30,000 Americans
may have the disease at any given time.
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The life expectancy of an ALS patient averages
about two to five years from the time of diagnosis. Half of all affected
live more than three years after diagnosis.
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About twenty percent of people with ALS live
five years or more and up to ten percent will survive more than ten
years and five percent will live 20 years. There are people in whom ALS
has stopped progressing and a small number of people in whom the
symptoms of ALS reversed.
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ALS occurs throughout the world with no racial,
ethnic or socioeconomic boundaries.
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ALS can strike anyone. Someone you know or love
will die from ALS unless a cure or prevention is found.
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Present treatment of ALS is aimed at symptomatic
relief, prevention of complications and maintenance of maximum optimal
function and optimal quality of life. Most of this, in the later stages,
requires nursing management of a patient who is alert but functionally
quadriplegic with intact sensory function, bedridden and aware he or she
is going to die.
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In 1991 a team of ALSA-funded researchers linked
familial ALS to chromosome 21. In 1993 the research team identified a
defective SOD1 gene on chromosome 21 as responsible for many cases of
familial ALS. Further study indicated over 60 mutations (structural
defects) in the SOD (superoxide dismutase) enzyme which alters the
enzyme's ability to protect against free radical damage to motor
neurons. These studies open possibilities for future therapies or
strategies to effectively mediate both familial and sporadic ALS. But
much more research on the SOD enzyme is needed. Also, researchers have
not ruled out other gene involvement (on other chromosomes) in ALS.
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The
financial cost to families of persons with ALS is exceedingly high. It
is estimated that in the advanced stages, care can cost an average of
$200,000 a year. Patients' and relatives' entire savings are quickly
depleted because of the extraordinary cost involved in the care of ALS
patients.
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