Individuals and families affected by Huntington's disease can take steps to ensure that they receive the best advice and care possible. Physicians and state and local health service agencies can provide information on community resources and family support groups that may exist.
Possible types of help for people with Huntington's disease include:
- Legal and social aid
- Home care services
- Recreation and work centers
- Group housing
- Institutional care.
(Click Huntington's Disease Support for more information.)
The rate of progression, as well as the age when symptoms of Huntington's disease appear vary from person to person. Adult-onset Huntington's disease most often begins in middle age. Individuals with juvenile Huntington disease develop symptoms when they are young -- before age 20.
In general, the duration of the disease ranges from 10 to 30 years. The most common causes of death are infection (most often pneumonia), injuries related to a fall, or other complications.
At this time, there is no way to stop or reverse the course of 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 at least to the Middle Ages. 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" to describe this highly complex disorder.