Thursday, May 1, 2014

May is Huntington's disease awareness month - Have you heard of Huntington's disease?

Have you ever heard of Huntington's disease (HD)? Perhaps you may know it by its earlier name, Huntington's chorea. It's a brain disease that can strike at any age, but most commonly shows signs during the middle-age years. It affects both men and women equally, but it is a genetic disorder passed from parent to child, so for someone to have the disease, one parent must have a dominant HD gene. There are about 300,000 people in the U.S. who have HD. I couldn't find statistics for Canada, but they are very likely proportionally the same as in the U.S.

The disease is a progressive one, with no cure. For some people, the symptoms start slowly, for others more quickly. Unless you know you have your parents have the gene, HD isn't usually the first illness that a doctor would think of if you start complaining of memory loss and confusion, difficulty coping in new situations, some muscle twitching, fidgeting, or clumsiness.

Eventually the symptoms become stronger and begin to interfere with daily activities. The jerking motions and involuntary movements make it difficult to perform even simple tasks, and falls may be common. As the symptoms continue to worsen, it becomes impossible for someone with HD to care for him or herself.

The Huntington's Disease Society of America website has a booklet - a Family Guide - that discusses the symptoms of HD, living with HD, testing for HD, and the search for a cure. The site also offers information on how to get help and ongoing research. For Canadians, the Huntington Society of Canada offers several tip sheets and also provides a good bit of information on HD and on how to find help. These sites are good places to go to learn more about HD.

I personally don't know too much about Huntington's disease, but an online friend who I met several years ago has it. I've been following her journey over the past few years and it made me realize how little most people know about it. So I hope this post has helped raise a bit of awareness about this little known and little understood disease.

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