Outlook

HD starts slowly but finally results in severe brain damage. People with the disease gradually lose cognitive functions, ability to carry out everyday activities, and ability to respond appropriately to their surroundings. They eventually become completely dependent on others for care. These losses cannot be stopped, but the speed with which they occur varies by person.

HD is considered to be a terminal disease. The actual cause of death usually is a physical illness such as pneumonia, heart failure, or respiratory failure. Such illnesses can be debilitating in a person who is already weakened by the effects of the disease. Injuries, choking, and suicide are other causes of death. On average, a person with HD lives about 15 years after the disease is diagnosed. Persons with the juvenile form of the disease rarely live to adulthood.

The disease affects every member of the family. Knowledge of the outcome creates a substantial emotional and psychological burden for affected persons and their family members.

A genetic test is available that predicts a person’s risk of developing HD. Because of the many issues that arise from a test that predicts the possibility of developing such a devastating disease, genetic counseling should always be provided before testing. A genetic counselor can acquaint an individual and family members with all the implications of testing.

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