What is HD? Huntington’s disease is a brain disorder caused by a mutated huntingtin gene. It causes nerve cells in particular areas of the brain to gradually die off, affecting both the mind and the body. Symptoms of HD usually first appear in people between the ages of 30 and 50, and progress to become more serious over time.
What are the symptoms? HD affects the body, causing movement problems such as clumsiness, poor balance, involuntary gestures, and, later on, difficulty with speaking and swallowing. It can affect cognition, such as the ability to understand and retain information. People with HD may become forgetful and have problems concentrating and making decisions. HD can also cause mood problems such as depression, anger and irritability. Different people get different symptoms, even within the same family, and the problems may change over time. HD usually gets worse over a period of 10 to 25 years, and is eventually fatal.
Who gets HD? Both men and women and people of any racial or ethnic background can get HD, although it is probably more common among those with a European background. It can’t be caught or transmitted because it is caused by a mutated gene. Almost everyone with HD inherited the faulty gene from a parent, although every once in a while the gene mutation appears randomly in a person who has no family background of the disease. Although people who get HD are born with the gene, it usually does not cause symptoms until adulthood, for reasons scientists don’t fully understand. An article at the science news website HD Buzz written by neurologist Dr Ed Wild explains the genetics of HD in more detail.
How do I know whether I am at risk? If one of your parents has or had HD you have a 50-50 chance of inheriting the gene. HD does not skip generations. A genetic test can tell you whether or not you carry the gene, but it cannot tell you when you will develop symptoms.
How is it treated? Currently, there are no medications that can prevent, stop, cure or slow the progression of the disease. However, some medicines and other therapies improve the symptoms of HD, so it is important to be treated by a doctor who has experience treating people with HD. The aim of Enroll-HD is to speed up the progress of research so that new, more effective treatments will be available sooner and that care for HD patients is improved.
More information for people with HD, their families and friends:
These brochures and websites are a good place to start for basic information about different aspects of the disease.
From the Huntington’s Disease Society of America:
From the Huntington Society of Canada:
- What is Huntington’s Disease? Includes details about the stages of the disease.
From the Huntington Study Group in the US:
- HD Basics Outlines the range of HD symptoms.
- What is Juvenile Huntington’s?
- Fact Sheets Specialized documents that offer advice and information about many aspects of HD–from eating and swallowing to legal problems. Some are translated into Bengali, Polish, Punjabi and Urdu.
For help with HD in your region:
|Worldwide||Contact information for many of the world’s Huntington’s organizations and medical centers from Argentina to Zimbabwe can be found at the International Huntington Association.|
|United States||Find a local chapter of the Huntington’s Disease Society of America. Some states also have HD Centers of Excellence, where you can be seen by a team of medical professionals who specialize in treating HD.|
|United Kingdom||Look for a local branch of the Huntington’s Disease Association.|
|Canada||Contact the Huntington Society of Canada/Société Huntington du Canada|