What is Huntington's disease?Woody Guthrie and his mother suffered from a rare hereditary nervous disorder called Huntington's disease, also known as Chronic Progressive Chorea and sometimes Woody Guthrie's disease. This disorder causes a gradual deterioration of the mental faculties, resulting in confusion, memory loss and dementia. It is also marked by chorea: fast, jerky, involuntary spasms. Eventually the disease often causes fatal complications in the body such as choking or infection. According to the Huntington's Disease Society of America, a group founded in part by Marjorie Guthrie, the disease affects one in every 10,000 Americans.
There is no known cure for HD, and treatment is limited to relief of its symptoms. Visit the websites listed below for more information about this subject.
Huntington's Disease Society of America
"Soon after the legendary folk singer, Woody Guthrie, lost his battle with HD, his widow Marjorie, sought out other families affected by this devastating disease. In 1967, a handful of dedicated volunteers formed the Committee to Combat Huntington's disease. Today, HDSA continues the mission Marjorie Guthrie began, emerging as a national organization consisting of 37 community-based volunteer chapters, two national field directors and a national office that provides leadership, information, support and guidance to our HD families."
The Huntington Project
"The Huntington Project brings together clinical and basic scientists, individuals and families affected by Huntington's disease (HD), advocacy groups, and all others in the HD community to find and develop treatments that make a difference in the lives of those affected by HD. By engaging the entire community in the planning and execution of clinical research, the Huntington Project will maximize the efficiency and fruitfulness of the search."
Huntington's Disease Association
"The Huntington's disease Association exists to support people affected by the disease and to provide information and advice to professionals whose task it is to support Huntington's disease families in the UK."
Huntington's Disease Lighthouse
"The HDLighthouse mission is to present and explain the latest research findings so that HD families can become proactive in their care, have hope for the future, and make good decisions in the present."
International Huntington Association
"...a federation of national voluntary health agencies that share common concern for individuals with Huntington's disease and their families. Each agency promotes lay and professional education, individual and family support, psycho-social, clinical and biomedical research, and ethical and legal considerations related to Huntington's disease in its respective country."