Huntington Disease - Experience

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Introduction to Huntington's disease

In 1872, the American physician George Huntington wrote about an illness that he called "an heirloom from generations away back in the dim past." He was not the first to describe the disorder, which has been traced back to the Middle Ages at least. One of its earliest names was chorea,* which, as in "choreography," is the Greek word for dance. The term chorea describes how people affected with the disorder writhe, twist, and turn in a constant, uncontrollable dance-like motion. Later, other descriptive names evolved. "Hereditary chorea" emphasizes how the disease is passed from parent to child. "Chronic progressive chorea" stresses how symptoms of the disease worsen over time. Today, physicians commonly use the simple term Huntington's disease (HD) to describe this highly complex disorder that causes untold suffering for thousands of families.

More than 15,000 Americans have HD. At least 150,000 others have a 50 percent risk of developing the disease and thousands more of their relatives live with the possibility that they, too, might develop HD.

Until recently, scientists understood very little about HD and could only watch as the disease continued to pass from generation to generation. Families saw the disease destroy their loved ones' ability to feel, think, and move. In the last several years, scientists working with support from the National Institute of Neurological Disorders and Stroke (NINDS) have made several breakthroughs in the area of HD research. With these advances, our understanding of the disease continues to improve.

This brochure presents information about HD, and about current research progress, to health professionals, scientists, caregivers, and, most important, to those already too familiar with the disorder: the many families who are affected by HD.

Return to Huntington's Disease

See what others are saying

Comment from: JV, 35-44 Male (Caregiver) Published: November 06

My wife is 40 years old and was diagnosed in early 2007. Because I'm older, we both stopped working later that year and began traveling to all the places left on our travel list. It was great the first few years, but in 2011 we made our last grand cruise. It became too difficult with her physical and emotional deterioration. All symptoms are now apparent from anger, anxiety, OCD and aggression to physical movements, speech impairment, and falling down. I now find myself walking on eggshells and feeling less and less close to her present-day self, but still very much dedicated to our past memories and love. We sleep in separate rooms for nearly two years now. She cannot be physically close to me, she cannot reason well, and she only wants her daily routine. Any deviation from this upsets her, and I pay the emotional price with her outbursts. I understand this is not the woman with whom I fell in love and lived many wonderful years of married life; but it is my new reality. I will take care of her until the end. We have good insurance, so she has the best of care at home, but wondering when will be the right time for better care in a good facility. For me: I'm coping, but don't know if I can do it alone. Life continues.

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Comment from: Jade, 25-34 Male (Caregiver) Published: October 08

I was engaged to a man who tested positive for Huntington's disease. He left me 1.5 years ago although I was prepared to take care of him. He was exhibiting anger outbursts, selfishness, a sense of being bonded to me disappeared. I've had a difficult time healing because so much of his behavioral problems happened at home. Others didn't see his anger or selfishness. Now he is harassing me through text and media. He seems fixated on my dogs. He will ask about them and in the same statement tell me how horrible I am. It's so irrational it starts to make you feel crazy. He was 32 when he left and was twitching in his lip, and exhibiting the behavioral issues.

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