Caring for People with Huntington's Disease
Disease is an inherited degenerative neuropsychiatric disorder which affects
both body and mind. Symptoms most commonly begin between the ages of 35
and 50, although onset may occur any time from childhood to old age. Research
is progressing rapidly, but there is currently no cure.
Huntington's disease is inherited in an autosommal dominant fashion. Each child of an affected parent has a 50 % chance of inheriting the disease and is said to be at risk. The discovery of the HD gene in 1993 has made it possible to test at-risk individuals for Huntington's disease before symptoms occur. In the absence of a cure, however, the decision to be tested or not remains a difficult one, and there are many important legal, financial and personal considerations. For more information about the genetic basis of Huntington's disease, you may wish to visit the Online Mendellian Inheritance in Man (OMIN) to learn about the genetic basis or the DNA library at the National Library of Medicine to see the actual gene sequence.
features of Huntington's disease can be thought of as a triad of emotional,
cognitive and motor disturbances. Symptoms include chorea (dance-like involuntary
movements), clumsiness, slurred speech, depression, irritability and apathy.
Cognitive losses include intellectual speed, attention and short-term memory.
disease affects people in different ways. One member of a family may have
more trouble with clumsiness while another may have emotional outbursts.
Moreover, symptoms of Huntington's disease in the same individual change
Although there is currently no overall remedy for this disease, professionals are in agreement that a symptom-specific, interdisciplinary approach is the best way to care, maintain and improve the quality of life for the affected individual or family.
page is not meant to be an authoritative work on Huntington's disease.
This work represents information gathered from many sources from many involved
in the care of people with Huntington's disease. There is no substitute
for accurate diagnosis of Huntington's disease provided by a clinician
familiar with the disease. I have purposefully not touched on the use of
medications to treat some of the behavioral problems of Huntington's disease.
Information about medications, for health care providers can be found in
the book by Neal Ranen.
page does not reflect the opinions or consensus of the Department of Neurology
or those of the University of Kansas Medical Center or of the University
The following areas are being developed
Other sources on the WWW dealing with Huntington's disease:
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