What is HD?

Huntington’s Disease (HD) is a hereditary brain disorder that affects people of all races all over the world. It takes its name from Dr. George Huntington, a Long Island physician who published a description of what he called “hereditary chorea” in 1872. You can read the original paper “On Chorea”. From the Greek word for “dance”= chorein, Chorea refers to the involuntary movements which are among the common symptoms of HD. Therefore Huntington’s Disease was at first called Huntington’s Chorea. But, because “Chorea” is only one symptom of the three which are characteristic for this desease, it was in later years called Huntington’s Disease.

Until quite recently, little was known or published about HD. Yet in the last twenty years, much has been learned about the causes and effects of HD and about treatment, therapies and techniques for managing the symptoms of the disease. In 1993, after a ten-year search, scientists found the gene that causes HD, and important advances have flowed from this dramatic discovery. Many scientists are actively engaged in the search for effective treatments to stop or reverse the effects of HD, and eventually to cure it altogether.

HD is a degenerative disease whose symptoms are caused by the loss of cells in a part of the brain called the basal ganglia. This damage to cells affects cognitive ability (thinking, judgment, memory), movement, and emotional control. Symptoms appear gradually, usually in midlife, between the ages of 30 and 50. However, the disease can strike young children (juvenile form) and the elderly.

In most cases, people can maintain their independence for several years after the first symptoms of HD appear. A knowledgeable physician can prescribe treatment to minimize the impact of the symptoms. Allied health professionals, such as social workers, occupational and physical therapist, speech-language pathologists (speech therapists) and nutritionists, can all play a useful role in maximizing abilities and prolonging independence.

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