1/23/2008 - Daily
Understanding Huntington’s Disease

Patient Power programs feature renowned experts and inspiring patients, where you can rely on the latest and most relevant information to make important decisions about your health. Often the discussions focus on illnesses that have not received the attention deserved. One such illness is Huntington's Disease (HD), also commonly referred to as Huntington's chorea, a neurodegenerative disease that breaks down motor skills, cognitive abilities and causes various emotional changes like depression. These changes can range from uncontrolled movements, moodiness, obsession, compulsion, and even rage.

In this program, Andrew is privileged to be joined by renowned expert Dr. Jane Paulsen, Professor of Psychiatry, Neurology, Psychology and Neurosciences at the University of Iowa Healthcare Center. Dr. Paulsen is also the director of the Huntington’s Disease Center where a wealth of information is available for patients with HD. As a neuropsychologist with over 15 years of active research in Huntington's disease, she is one of the leading authorities on this topic. Andrew and Dr. Paulsen dissect issues that have many HD families concerned such as discrimination against HD patients, juvenile HD, and the status of Food & Drug Administration (FDA) drug approval. Dr. Paulsen also talks about the excitement surrounding research and clinical trials, in addition to information about supplements. She talks about coenzyme Q10 and what it is doing for people with Huntington’s disease, Parkinson’s disease and how far we have come since the HD gene was discovered. Patients are now able to receive a simple blood test that clears up all uncertainty. However, for some patients like Karen Milek, a participant in the program, family history prepares them for what could be.

It was no surprise to Ms. Milek when she tested positive for the Huntington’s disease gene since her family was no stranger to this hereditary illness. Karen’s mother, aunt, uncle and younger sister were all diagnosed with HD. Karen’s older sister and younger brother have made a personal choice not to be tested fearing for the future of their children. While this concerned Karen, it further fueled her desire to educate others about this horrendous illness. Listen to Karen share her story about how she is coping with HD, what she is doing to help others and her personal efforts to stay healthy despite lack of available drugs.

Unfortunately there are currently no drugs approved for Huntington’s disease patients, which causes great concern among HD families. While physicians use drugs such as clonazepam, fluoxetine, sertraline, nortriptyline to help manage this condition, to date the FDA has not approved anything specifically for this illness. Dr. Paulsen urges patients not to be discouraged as the FDA is currently reviewing an HD drug called Tetrabenazine, all in hopes of a favorable vote. If approved, Tetrabenazine would be the first drug approved for Huntington’s disease. Fortunately, thanks to academic and clinical collaborations, we can remain optimistic with continuous efforts from organizations like the Cure Huntington's Disease Initiative and the Huntington's Disease Society of America.

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