Huntington’s Disease Awareness Month

Contributed by: Jessica Koerner, Pharm.D. Candidate

KU School of Pharmacy

Text Box: What is Huntington’s disease? Huntington’s disease (HD) is a disorder of the brain that affects a person’s nervous system. HD usually develops in adulthood and can cause a wide range of symptoms. Approximately 30,000 Americans are known to have HD with 150,000 more at risk of inheriting the disease from a parent. HD affects both men and women equally and does not appear more frequently in one race or ethnic group over another. HD is a slow, progressive condition that affects all people differently. Unfortunately at this time there is no cure, and a person with HD may live for 15 to 25 years after developing the first symptoms. What causes HD? HD is a hereditary disease caused by a defective gene. The gene is passed from parent to child, and each child born to a person who carries the HD gene has a 50:50 chance of inheriting the defective gene which causes the disease. Because the symptoms of HD generally appear between 30 and 50 years of age, many parents have already had children and possibly passed down the gene before ever knowing they have the disease. A predictive genetic test is available for those who have a parent with HD, and it will identify whether or not the individual has inherited the defective gene. Many times a person

Text Box: would like to have the genetic test done before starting a family of their own in order to eliminate the risk of passing down the gene to their children. In order to perform the predictive genetic test, a person must be at least 18 years of age and extensive emotional counseling is necessary to prepare for the possible results. What are the symptoms? Some of the early symptoms of HD are personality changes including depression and mood swings, uncontrolled movements such as twitching of the fingers and toes, difficulty with balance leading to clumsiness and stumbling, short-term memory lapses, and difficulty concentrating. As the disease progresses, symptoms continue to develop and include extreme uncontrolled movements, trouble speaking and swallowing, weight loss, and a greater degree of emotional changes such as severe depression and behavioral disorders. Those symptoms make it nearly impossible for a person to function on the level they once were, and most individuals with HD require full nursing care in the end stages of the disease. Is there any treatment? Although there is no cure for HD at this time, there is medication available to help treat symptoms of uncontrolled move

Text Box: ments, depression, and mood swings. Speech therapy can significantly improve a person’s speech and also aid in the improvement of swallowing difficulties one many experience. Eating a high calorie diet can help prevent weight loss, which often leads to improvement in uncontrolled movements. Emotional support and counseling is important for both the person with HD as well as their family. It is extremely frustrating for a person to lose functions they have had their entire life, and it is also very difficult to watch a loved one go through such a horrific experience. Without that support, the experience can be even more difficult than it already is. May is Huntington’s disease awareness month and there is no better time to familiarize ourselves with the tragic disease many live with on a daily basis. It is a great reminder to us to count our blessings and not take our good health for granted. Support given to those suffering provides much benefit and is always appreciated. For more information you can talk to your pharmacist or physician or visit the Huntington’s Disease Society of America at www.hdsa.org.

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