Huntington's disease in popular culture: a brief historical perspective (original) (raw)
Related papers
1 Editorial Huntington’s Disease in Popular Culture: A Brief Historical Perspective
2016
Stairs, the narrator suggests a startling sea change in the world of Huntington’s disease (HD). “The news-papers and television and magazines have been full of Huntington’s lately, ” she observes. “Huntington’s has become a fashionable disease, displacing multiple scle-rosis and even schizophrenia in the public’s curiosity.” [1]. She refers, no doubt, to the publicity surrounding the discovery of a genetic marker for HD in 1983 and the beginning of presymptomatic genetic testing three years later [2]. The start of the Human Genome Project in 1990 and the identification of the expanded Hunt-ingtin gene in 1993 drew further attention to HD [3]. Considering that many people get their medical information from popular culture, it is useful to con-sider how HD has been portrayed on television and also in novels such as House of Stairs [4]. Why did the dis-ease suddenly start to appear at this time when it was largely absent before? What aspects were emphasized? How accurate were fictional...
2013
Center for Culture and Health. The cases used here are discussed in Carole H. Browner and H. Mabel Preloran's monograph, Neurogenetic Diagnoses: The power of hope and the limits of today's medicine (Routledge, 2010). These cases are also discussed in Devin Flaherty, H. Mabel Preloran and Carole Browner's chapter "Is It 'Disclosure'? Rethinking Tellings of Genetic Diagnoses" in Disclosure and Identity in Health and Illness (working title), Mark D.M. Davis and Lenore Manderson, eds. (Routledge, in press). A much earlier version of this paper was presented at the Disclosing subjects: bodies, selves intimacies, politics symposium,
P02.276 The impact of huntington's disease on caregivers: The czech experience
European Psychiatry, 2000
Evaluar los principales problemas en los cuales los cuidadores (CG) de pacientes con enfermedad de Huntington (HD) se ven enfrentados, desde los estadios tempranos de la enfermedad. Diseño: 21 CGs (4 esposas, 8 esposos, 7 hijas, 1 madre y 1 hijo) fueron investigados en base a una entrevista estructurada con el uso de un cuestionario. Las áreas a evaluar fueron: A. Problemas en obtener información acerca de los estadios iniciales de la enfermedad. B. Problemas con el diagnóstico de la enfermedad. C. Comunicación con el médico. D. Manifestaciones clínicas que afectan a los CGs. E. Información acerca de grupos de apoyo así como la utilidad de éstos. Resultados: 14/21 CGs tuvieron problemas severos en la obtención de información, 7/21 tuvieron información suficiente. El riesgo del desarrollo de HD en sus hijos fue el principal problema relacionado con el diagnóstico de la enfermedad. La comunicación con el médico tratante fue reportada como problemática en 15/21 CGs, mientras que en 6/21 la experiencia fue buena. Cambios afectivos y del comportamiento fueron reportados como los síntomas más severos de HD para 12/21 CGs (agresión en 12/21, depresión en 7/21 y problemas sexuales en 3/21), síntomas de demencia en 10/21, disartria en 7/21, movimientos involuntarios y/o desórdenes de la marcha en 3/21 CGs. La información acerca de la existencia de grupos de apoyo para HD entre médicos y programas de salud fue insuficiente para 16/21 CGs. La utilidad de los grupos de apoyo fue extremadamente importante para todos los CGs. Conclusiones: Médicos y personal de salud deberían aceptar la idea de que los CG, aparentemente en buena condición física y de salud, necesitan tanto ayuda psicológica como médica.
Studying Stigma, Medicine, and Huntington's Disease
2011
Abstract: My current work continues the study of stigma, medicine, and hereditary neurological and psychiatric Huntington's disease that I began in 1995" Mapping Fate: A Memoir of Family, Risk, and Genetic Research"(UC Press, 1995). But whereas Mapping ...
The story of George Huntington and his disease
Annals of Indian Academy of Neurology
George Huntington described some families with choreiform movements in 1872 in the United States of America and since then many such families have been described in other parts of the world and works on the genetics of the disease have brought new vistas in the understanding of the disease. In 1958, Americo Negrette, a young Venezuelan physician observed similar subjects in the vicinity of Lake Maracaibo which was presented by his co-worker, Ramon Avilla Giron at New York in 1972 when United States of America had been commemorating the centenary year of Huntington's disease. Nancy Wexler, a psychoanalyst, whose mother had been suffering from the disease attended the meeting and organized a research team to Venezuela and they systematically studied more than 18,000 individuals in order to work out a common pedigree. They identified the genetic locus of the disease in the short arm of chromosome 4 and observed that it was a trinucleotide repeat disorder.