Research & Reference
- Huntington's Disease: Opposing ViewpointsAn Opposing Viewpoints landing page on Huntington's Disease. This page includes links to academic journals, reference works, magazine articles, and a more.
- Huntington's Disease: Credo ReferenceA Credo Reference landing page on Huntington's Disease. This page includes links to reference works, journal articles, and a mind map.
Streaming Media
- Twitch - A Personal Journey About Huntington’s DiseaseTwitch follows 18-year-old Kristen Powers as she undergoes genetic testing for the disease that killed her mother. Huntington’s Disease (HD), a neurodegenerative brain disorder, destroys an individual’s ability to walk, talk, think, and reason, eventually leading to death. The film will chronicle the emotional, social and medical journey through this important test, as well as the impact it has on an individual’s future.
- Huntington's DiseaseHuntington's disease (HD) is an inherited brain disorder passed from parent to child via a defective gene. Onset usually occurs at age 35-45 years, after which people experience a steady decline over the next 20 years or so.
Perspectives
Can You Help Me?
Can You Help Me?: Living in the Turbulent World of Huntington Disease shares the surprising, insightful, challenging, and even encouraging stories of patients and their families who live with Huntington Disease. Having seen patients for more than 40 years, Dr Thomas Bird, a pioneerneurogeneticist, adds a human touch to this genetic brain disease that devastates persons during mid-life when they can least afford it.With a brief history of Huntington Disease and the occasional scientific detail, the true heart of the book is the human experience of the disorder:DT The man who cannot stay out of prison because he is addicted to being a burglar.DT Another man shoots and kills his roommate while watching television and cannot explain why he did it.DT The woman with Huntington Disease copes with her depression by using Texas line dancing.DT A twelve year old girl with juvenile Huntington Disease who can barely walk and talk, but her classmates rally around with touching and heartfelt support.DT And the 72 year old man with late onset Huntington Disease and severe depression is made worse by ECT, but improved (for a while) with Transcranial Magnetic Stimulation.These are just some of the compelling stories of people of all ages and in all walks of life who feel trapped by a progressive degenerative brain disease from which there is no escape.
The Woman Who Walked into the Sea
When Phebe Hedges, a woman in East Hampton, New York, walked into the sea in 1806, she made visible the historical experience of a family affected by the dreaded disorder of movement, mind, and mood her neighbors called St.Vitus's dance. Doctors later spoke of Huntington’s chorea, and today it is known as Huntington's disease. This book is the first history of Huntington’s in America. Starting with the life of Phebe Hedges, Alice Wexler uses Huntington’s as a lens to explore the changing meanings of heredity, disability, stigma, and medical knowledge among ordinary people as well as scientists and physicians. She addresses these themes through three overlapping stories: the lives of a nineteenth-century family once said to "belong to the disease”; the emergence of Huntington’s chorea as a clinical entity; and the early-twentieth-century transformation of this disorder into a cautionary eugenics tale. In our own era of expanding genetic technologies, this history offers insights into the social contexts of medical and scientific knowledge, as well as the legacy of eugenics in shaping both the knowledge and the lived experience of this disease.