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What is Huntington's
Disease ?
Huntington's Disease is an inherited, progressively
degenerative neurological disorder that results in the loss of both mental
capability and physical control. The ability to think, to speak, and to walk
is greatly diminished as the disease progresses. One of the most unusual
facts about Huntington's Disease is that Indiana has the second highest
reported HD population. HD is named after Dr. George Huntington, an
American physician, who was first to publish a precise description of the
symptoms and a course of the disease in an article dated in 1872.
HD was once thought to affect about one person in 20,000 but
current estimates are closer to one in 10,000 people. As with other diseases
of this sort, HD afflicts not only the affected person, but everyone in his
or her family. HD is hereditary and each child of an affected parent has a
50-50 chance of inheriting the HD gene. This disease strikes individuals in
the prime of their lives. The average onset of the disease is between the
ages of 30-50 and the duration of the illness is approximately 10-25 years.
Children as young as 2 and adults as old as 80 have developed HD.
In the early stages, perhaps even prior to diagnosis, there
are some intellectual, motor, and emotional impairment. With the progression
of the disease, the weakened individual succumbs to pneumonia, heart failure
or other complications ultimately resulting in death.
The Huntington's Disease gene was discovered in the spring of
1993. This dramatic discovery has simplified the testing process, made it
much more financially realistic and increased the accuracy of the diagnostic
process. The cause of dying brain cells was discovered in the fall of 1997.
This exciting breakthrough has enabled drug trials to begin and given renewed
hope of finding a way to possibly slow the progression or prevent the onset
of HD.
Presently, there
is no effective treatment or known cure !!!
Symptoms
Early symptoms appear slowly. These can
include involuntary movements of the body and limbs, marked personality
changes, depression, withdrawal, euphoria, and increasing forgetfulness. As
the disease progresses, speech becomes slurred, swallowing difficult, and
gait unsteady. Reasoning and judgment become impaired.
Population
Affected
Huntington's Disease is a hereditary
disorder. Each child of a parent who has the Huntington's gene has a 50-50
chance of inheriting the disorder and is considered to be "at-risk".
HD affects individuals of both sexes equally as well as all races and ethnic
groups throughout the world.
Prevalence
Huntington's Disease, once thought of as
rare, is now recognized as one of the more common hereditary diseases. In the
past, families often hid HD as a shameful secret. This fact, coupled with
frequent medical misdiagnosis of HD, has led to an underestimation of it's
prevalence.
Indiana has the second highest recorded HD population in the
country. Current estimates are that up to 1 in 10,000 people in the United
States have the disorder. HD creates a ripple effect because relatives are
likely to experience the disease and it's varied consequences. It is
therefore estimated that 1 in 1,000 Americans are directly affected by
HD.
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