- Introduction to Huntington's disease
- What causes Huntington's disease?
- How is Huntington's disease inherited?
- What are the symptoms and major effects of Huntington's disease?
- At what age does Huntington's disease appear?
- How is Huntington's disease diagnosed?
- What is presymptomatic testing?
- How is the presymptomatic test conducted?
- How does a person decide whether to be tested?
- Is there a treatment for Huntington's disease?
- What kind of care does an individual with Huntington's disease need?
- What community resources are available for Huntington's disease?
- What research is being done on Huntington's disease?
- How can I help?
- What is the role of voluntary organizations?
- Where can I get more information about Huntington's disease?
Huntington's disease facts*
*Huntington's Disease Facts by John P. Cunha, DO, FACOE
- Huntington's disease (HD) is a complex disorder that affect's a person's ability to feel, think, and move. Symptoms tend to worsen over time and the disease often runs in families. In people with one parent with HD, the chances of them developing it are 50-50.
- Huntington's disease is caused by a genetic degeneration of nerve cells in certain areas of the brain.
- Symptoms of HD include mood swing, irritability, depression, and anger. The disease may affect a person's judgment, memory, and other cognitive functions. In some, there can be uncontrolled movements in the fingers, feet, face, or trunk, or problems with coordination or balance.
- Adult-onset HD, with its disabling, uncontrolled movements, most often begins in middle age, however HD can begin at any age and the disease tends to progress more rapidly the earlier it begins.
- Huntington's disease is diagnosed by taking family history, CT scans, or MRIs.
- Presymptomatic genetic testing may be done on people who do not show symptoms but have a parent with the disease.
- There is no treatment to stop or reverse Huntington's disease, however there are some medications that can help keep symptoms under control. Treatment for HD includes the drug tetrabenazine, antipsychotic drugs, antidepressants, and tranquilizers.
- Patients who exercise tend to do better than those who do not.
- A person with HD may need assistance such as home care, or occupational therapy. Contact the Huntington's Disease Society of America for more information.
Introduction to Huntington's disease
In 1872, the American physician George Huntington wrote about an illness that he called "an heirloom from generations away back in the dim past." He was not the first to describe the disorder, which has been traced back to the Middle Ages at least. One of its earliest names was chorea,* which, as in "choreography," is the Greek word for dance. The term chorea describes how people affected with the disorder writhe, twist, and turn in a constant, uncontrollable dance-like motion. Later, other descriptive names evolved. "Hereditary chorea" emphasizes how the disease is passed from parent to child. "Chronic progressive chorea" stresses how symptoms of the disease worsen over time. Today, physicians commonly use the simple term Huntington's disease (HD) to describe this highly complex disorder that causes untold suffering for thousands of families.
More than 15,000 Americans have HD. At least 150,000 others have a 50 percent risk of developing the disease and thousands more of their relatives live with the possibility that they, too, might develop HD.
Until recently, scientists understood very little about HD and could only watch as the disease continued to pass from generation to generation. Families saw the disease destroy their loved ones' ability to feel, think, and move. In the last several years, scientists working with support from the National Institute of Neurological Disorders and Stroke (NINDS) have made several breakthroughs in the area of HD research. With these advances, our understanding of the disease continues to improve.
This brochure presents information about HD, and about current research progress, to health professionals, scientists, caregivers, and, most important, to those already too familiar with the disorder: the many families who are affected by HD.
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