Huntington Disease - Experience

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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.

Return to Huntington's Disease

See what others are saying

Comment from: Carmen, 65-74 Male (Caregiver) Published: July 30

My 66 year old husband has Huntington disease (HD) and diagnosed in 2000. He was a wonderful man and great provider. As the disease progressed, he displayed anger and rage and ultimately kept leaving me over and over to gamble and smoke. He is now in a nursing home and in his last stages I think, choking on his food and losing weight rapidly. It is very depressing for me because there is nothing I can do to make it better for the both of us. Moreover, I don't have family support from his daughter who denies this disease or the fact she may have it herself. This is a constant nightmare for me.

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Comment from: jacko, 75 or over Male (Caregiver) Published: August 06

My dad was diagnosed with Huntington disease (HD) late in life. He showed signs with involuntary movements when in his 60s but wasn't properly diagnosed till a couple of years ago. He's now 83. We had no knowledge of HD being in the family. We have been through the stages of depression, frustration and anger with dad but after being prescribed risperidone 0.5mg and sertraline 50 mg he is back to being his happy self. He says he's lucky because he has no pain. My family and I think he's very unlucky as this must be the worst condition we have ever seen. My sister and I are both in our 50s and we are scared to be tested. Dad's health is deteriorating, he falls a lot, chokes a lot, and his functions are packing up. We hope old age takes him before this cruel disease does.

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