Scottish Huntingtons Association

Huntingtons Disease is a neurological disorder, a disease of the brain. Cells in the central part of the brain known as the basal ganglia die. Since so much of the brain’s activity passes through this area, the death of these cells affects virtually everything about a person. Including movements, moods, and thinking processes. But because the damage caused by HD is only inside the brain, the person with HD may look relatively able bodied until the later stages of the disease. Caregivers often mistakenly assume that changes in the person are due to lack of motivation, laziness or worse, and not to the disease itself.

HD is a genetic disease that you get by inheriting a defective gene for HD from one parent. Every child of a parent with the defective gene for HD has a 50/50 chance of inheriting the gene, no matter how many children that parent has. If you do not inherit the HD gene, you cannot get the disease and you cannot pass it on to your children or their descendants. If you do get the HD gene, you will eventually get the disease. HD always manifests itself if you live long enough. It never skips a generation. As a genetic disease, HD is referred to as “a disease of families.” In many families touched by HD, more than one family member may have HD at the same time. Many relatives are at risk of later developing the disease.

Although people can first exhibit signs of HD at any age, most people first show them when they are in their 30s and 40s. Thus, HD is described as an “adult-onset disease”. As a progressive disease, HD begins very subtly and only the person with HD, close friends or relatives, and the trained eye of a physician can detect its earliest signs. It progresses in stages, slowly advancing for many years. It usually takes at least 15 to 25 years for the disease to run its course, sometimes longer. Younger people with hd may find their illness progresses at a faster rate.