Insight into the Psychosocial Aspects of Huntington's Disease in Chinese Society

2002 ◽  
Vol 32 (3) ◽  
pp. 305-310 ◽  
Author(s):  
Tak Yu Leung ◽  
Chi Ming Leung

Objective: To review the psychosocial aspects of Chinese families with Huntington's disease (HD) in Hong Kong. Method: The psychosocial aspects of five Chinese families in Hong Kong were studied with in-depth interviews and detailed analysis of case records. Results: Patients with HD are found to suffer from certain specific psychosocial adversities, including marital disharmony, social stigma and increased suicidal risk in those with relatively well-preserved cognitive function. A low request rate for presymptomatic testing for HD is also observed among these cases. Conclusions: Though the genetic defect in HD is universal and cuts across cultures, the problems faced by these patients and their families are never the same. Despite limited local experience due to a much lower prevalence, Chinese HD patients in Hong Kong are found to have specific needs that emerge from their ethno-historical background.

1994 ◽  
Vol 90 (1) ◽  
pp. 16-18 ◽  
Author(s):  
M. T. H. Wong ◽  
P. C. M. Chang ◽  
Y. L. Yu ◽  
Y. W. Chan ◽  
V. Chan

1997 ◽  
Vol 3 (4) ◽  
pp. 238-246 ◽  
Author(s):  
James F. Gusella ◽  
Francesca Persichetti ◽  
Marcy E. MacDonald

2005 ◽  
Vol 186 (2) ◽  
pp. 153-157 ◽  
Author(s):  
Sing Lee ◽  
Margaret T. Y. Lee ◽  
Marcus Y. L. Chiu ◽  
Arthur Kleinman

BackgroundResearch on stigma often focuses on general public attitudes and overlooks patients' subjective experiences of everyday stigma arising from significant others.AimsTo document and compare the interpersonal experiences of stigma in patients with schizophrenia and patients with diabetes mellitus in Hong Kong.MethodFour focus groups were conducted to generate a self-report questionnaire. Data were collected from out-patients with schizophrenia (n=320) and diabetes (n=160).ResultsSignificantly more patients with schizophrenia (>40%) than diabetes (average 15%) experienced stigma from family members, partners, friends and colleagues. Over 50% anticipated stigma and about 55% concealed their illness. Dysphoria occurred in over half.ConclusionsInterpersonal (especially intrafamilial) stigma was pervasive, hard to avoid and devastating to patients with schizophrenia. Family support had to be realised rather than assumed, despite the emphasis on relationship bonds in Chinese society Programmes that build the family as a rehabilitative resource should start early to reduce the development and adverse impacts of stigma.


1995 ◽  
Vol 7 (1) ◽  
pp. 7-12
Author(s):  
S. Claes ◽  
M. Decruyenaere ◽  
R. Dom ◽  
M. Malfroid ◽  
G. Evers-Kiebooms ◽  
...  

SummaryHuntington's disease (HD) is an autosomal dominant disorder of the central nervous system, characterised by neurological, cognitive and psychiatric pathology. Recently the causative genetic defect was discovered. We present a retrospective study of 59 HD patients, investigating correlations between molecular and clinical data.The correlation between CAG-repeatlength and age at onset is confirmed. No correlations between this biological marker and other clinical features are found (symptoms at onset, mode of progression of the disease).The consequences of these findings for predictive testing are discussed. Furthermore, a short overview of the predictive testing procedure in the Center for Human Genetics in Leuven (Belgium) is given.


Epigenomes ◽  
2020 ◽  
Vol 4 (3) ◽  
pp. 15
Author(s):  
Geraldine Zimmer-Bensch

In light of our aging population, neurodegenerative disorders are becoming a tremendous challenge, that modern societies have to face. They represent incurable, progressive conditions with diverse and complex pathological features, followed by catastrophic occurrences of massive neuronal loss at the later stages of the diseases. Some of these disorders, like Huntington’s disease (HD), rely on defined genetic factors. HD, as an incurable, fatal hereditary neurodegenerative disorder characterized by its mid-life onset, is caused by the expansion of CAG trinucleotide repeats coding for glutamine (Q) in exon 1 of the huntingtin gene. Apart from the genetic defect, environmental factors are thought to influence the risk, onset and progression of HD. As epigenetic mechanisms are known to readily respond to environmental stimuli, they are proposed to play a key role in HD pathogenesis. Indeed, dynamic epigenomic remodeling is observed in HD patients and in brains of HD animal models. Epigenetic signatures, such as DNA methylation, histone variants and modifications, are known to influence gene expression and to orchestrate various aspects of neuronal physiology. Hence, deciphering their implication in HD pathogenesis might open up new paths for novel therapeutic concepts, which are discussed in this review.


2021 ◽  
pp. 001139212110348
Author(s):  
Siqi Tu

This article focuses on unpacking the processes of how a rapidly rising group of urban upper-middle-class Chinese families decide to send their only children to the United States on their own for private secondary education. The article analyzes the socio-historical background of such choice and lays out these families’ various paths to opting out of the neoliberal school-choice market in China and eyeing American private secondary education as the ‘best’ option. Based on in-depth interviews with 33 parents in several Chinese mega-cities, the author demonstrates that Chinese urban upper-middle-class families choose such a transnational educational choice as a silent exit from the anxiety-ridden Chinese education system. Situated in the socio-historical transformation of contemporary Chinese society, the reasons for exiting range from dissatisfaction with the political narrative to educational aspiration of a ‘well-rounded’ education and resistance against the test-oriented pedagogical practices at school. This ethnographic research provides a unique perspective to engage with works on elite education in a global context and enriches the theorization of the global middle classes.


2021 ◽  
Vol 10 (1) ◽  
pp. 35-51 ◽  
Author(s):  
Eun Pyo Hong ◽  
Marcy E. MacDonald ◽  
Vanessa C. Wheeler ◽  
Lesley Jones ◽  
Peter Holmans ◽  
...  

Historically, Huntington’s disease (HD; OMIM #143100) has played an important role in the enormous advances in human genetics seen over the past four decades. This familial neurodegenerative disorder involves variable onset followed by consistent worsening of characteristic abnormal movements along with cognitive decline and psychiatric disturbances. HD was the first autosomal disease for which the genetic defect was assigned to a position on the human chromosomes using only genetic linkage analysis with common DNA polymorphisms. This discovery set off a multitude of similar studies in other diseases, while the HD gene, later renamed HTT, and its vicinity in chromosome 4p16.3 then acted as a proving ground for development of technologies to clone and sequence genes based upon their genomic location, with the growing momentum of such advances fueling the Human Genome Project. The identification of the HD gene has not yet led to an effective treatment, but continued human genetic analysis of genotype-phenotype relationships in large HD subject populations, first at the HTT locus and subsequently genome-wide, has provided insights into pathogenesis that divide the course of the disease into two sequential, mechanistically distinct components.


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