HD is a “neurodegenerative disease,” which means that it causes the progressive death of nerve cells in the brain.
Symptoms typically appear in mid-life, between the ages of 30 and 50, and progress for 10-25 years. However, the disease can also strike young children, adolescents and the elderly. HD is a complicated disease that affects the body, the mind and the emotions. There are symptoms of HD that are easy to see, like chorea/involuntary movements, and there are those that are less visible, such as forgetfulness, impulsiveness or depression. Symptoms of HD vary widely from person to person, even within the same family. In addition, symptoms change over time as the disease progresses.
Symptoms appear gradually and people with HD can maintain their independence for years. As you will learn, HD affects all aspects of a person’s life and treating it requires a broad-based approach. Prolonging independence may call for a team of health care professionals that may include a primary care physician, neurologist, social worker, speech language pathologist, nutritionist, occupational therapist and physical therapist, among others.
HD is a disease of families. Though everyone is born with the HD gene, the disease is caused by an abnormal copy of the gene that is passed from parent to child. It is not contagious in any way. Only a person who is born with the abnormal gene can ever get the illness or pass it on to their children. Every person who carries the abnormal copy of the gene will eventually develop symptoms, if they live long enough. Every child born to an affected parent has a 50% chance of being born with the gene that causes the disease. Males and females have the same chance of inheriting the abnormal gene. Those who have not inherited the gene will not get the disease and they cannot pass it on to their children. HD does not “skip” generations.
Excerpted from “Huntington’s Disease. A Family Guide” with permission from the Huntington’s Disease Society of America (HDSA), www.hdsa.org