All in the Family: Huntington’s Disease, Variability and Challenges for Clinical Neuropsychology

2015 ◽  
pp. 47-70 ◽  
Author(s):  
Lynette J. Tippett ◽  
Virginia M. Hogg
Keyword(s):  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Clinical Neuropsychology ◽  
The Family

Genetic counselling: a new diagnosis in the family

2020 ◽  
pp. 64-71
Author(s):  
Oliver Quarrell
Keyword(s):  
At Risk ◽  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Genetic Counselling ◽  
Genetic Disorders ◽  
Medical Doctors ◽  
Genetic Tests ◽  
The Family ◽  
Close Relatives ◽  
New Diagnosis

This chapter describes the process of genetic counselling in general but with an emphasis on Huntington’s disease. The chapter discusses issues for a new diagnosis in the family and describes the challenges of telling children that they are at risk. Medical doctors often lead genetic counselling teams as they are specially trained to give information about genetic disorders and explain the implications of genetic tests. The doctor or counsellor has to understand your particular circumstances and support you in a way that allows you to make your own decisions. A diagnosis of HD has implications for you and all your close relatives.

The Impact of Juvenile Huntington's Disease on the Family

2008 ◽  
Vol 13 (1) ◽  
pp. 5-16 ◽  
Author(s):  
Helen M. Brewer ◽  
Virginia Eatough ◽  
Jonathan A. Smith ◽  
Cath A. Stanley ◽  
Neil W. Glendinning ◽  
...  
Keyword(s):  
Huntington's Disease ◽  
Huntington’S Disease ◽  
The Family ◽  
Juvenile Huntington’S Disease ◽  
The Impact

Ethical aspects of a predictive test for Huntington’s Disease

2016 ◽  
Vol 23 (5) ◽  
pp. 565-575 ◽  
Author(s):  
Petra Lilja Andersson ◽  
Åsa Petersén ◽  
Caroline Graff ◽  
Anna-Karin Edberg
Keyword(s):  
Moral Responsibility ◽  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Suicide Attempts ◽  
Genetic Test ◽  
Predictive Test ◽  
The Family ◽  
Long Term Consequences ◽  
Test Result

Background: A predictive genetic test for Huntington’s disease can be used before any symptoms are apparent, but there is only sparse knowledge about the long-term consequences of a positive test result. Such knowledge is important in order to gain a deeper understanding of families’ experiences. Objectives: The aim of the study was to describe a young couple’s long-term experiences and the consequences of a predictive test for Huntington’s disease. Research design: A descriptive case study design was used with a longitudinal narrative life history approach. Participants and research context: The study was based on 18 interviews with a young couple, covering a period of 2.5 years; starting 6 months after the disclosure of the test results showing the woman to be a carrier of the gene causing Huntington’s disease. Ethical considerations: Even though the study was extremely sensitive, where potential harm constantly had to be balanced against the benefits, the couple had a strong wish to contribute to increased knowledge about people in their situation. The study was approved by the ethics committee. Findings: The results show that the long-term consequences were devastating for the family. This 3-year period was characterized by anxiety, repeated suicide attempts, financial difficulties and eventually divorce. Discussion: By offering a predictive test, the healthcare system has an ethical and moral responsibility. Once the test result is disclosed, the individual and the family cannot live without the knowledge it brings. Support is needed in a long-term perspective and should involve counselling concerning the families’ everyday life involving important decision-making, reorientation towards a new outlook of the future and the meaning of life. Conclusion: As health professionals, our ethical and moral responsibility thus embraces not only the phase in direct connection to the actual genetic test but also a commitment to provide support to help the family deal with the long-term consequences of the test.

Non-Participation in Predictive Testing for Huntington's Disease: Individual Decision-Making, Personality and Avoidant Behaviour in the Family

1997 ◽  
Vol 5 (6) ◽  
pp. 351-363 ◽  
Author(s):  
Marleen Decruyenaere ◽  
Gerry Evers-Kiebooms ◽  
Andrea Boogaerts ◽  
Trees Cloostermans ◽  
Jean-Jacques Cassiman ◽  
...  
Keyword(s):  
Decision Making ◽  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Predictive Testing ◽  
Individual Decision ◽  
Individual Decision Making ◽  
The Family

The intertwining of the family system in Huntington's disease.

1984 ◽  
Vol 2 (3) ◽  
pp. 298-308 ◽  
Author(s):  
Etienne Phipps ◽  
Philippe Desplat
Keyword(s):  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Family System ◽  
The Family

Psychosocial impact of Huntington’s disease on families and spouses from the perspective of the Family Systems Theory

SURG Journal ◽  
1969 ◽  
Vol 1 (1) ◽  
pp. 51-62 ◽  
Author(s):  
Ekaterina Smolina
Keyword(s):  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Systems Theory ◽  
Family Systems ◽  
Late Onset ◽  
Marital Therapy ◽  
Predictive Testing ◽  
Family Systems Theory ◽  
Psychosocial Impact ◽  
The Family

Huntington’s disease (HD) is a hereditary neurological disorder with a late onset and a long period of progression that is characterized by changes in personality and physical aptitude. Predictive testing for HD was introduced in 1993 but there have been no major advancements toward a cure since. The disorder is accompanied by emotionally charged issues that affect not only the carrier but the family members as well. The current understanding of the psychosocial impact of Huntington’s disease is limited in terms of both the depth and the breadth of the existent research. The present study examines the literature to date from the perspective of the Family Systems Theory, introduced by Murray Bowen in 1978. A description of the implications of the introduction of the disease into family life as well as a discussion of the various psychological aspects of the disorder are presented in light of four postulates of the theory. Findings suggest that Family Systems Theory may be employed as a useful model for implementation of better family and marital therapy practices for the relatives of the affected individuals because it calls for a more individualized and flexible approach, which is ultimately what is required to meet the unique needs of HD patients.

scholarly journals Drug Watch Deutetrabenazine

2018 ◽  
pp. 20-22
Author(s):  
Ranjan Bhattacharyya
Keyword(s):  
Risk Factor ◽  
Family History ◽  
Tardive Dyskinesia ◽  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Hepatic Impairment ◽  
Close Monitoring ◽  
Mao Inhibitors ◽  
The Family ◽  
Us Fda

Deutrabenazine is indicated in the management of chorea associated with Huntington’s disease and in the treatment of Tardive dyskinesia in adults by US FDA. However, it should be used with a pinch of salt, as it can raise the risk of depression and suicidal thoughts with unusual behavioural abnormalities specially in patients with Huntington’s disease. The family history is an added risk factor and close monitoring is required and the molecule is contraindicated in this group of patients. In hepatic impairment it is also not recommended. It shouldn’t be used with Reserpine. A window period of 3 weeks after discontinuation of reserpine and 2 weeks for MAO inhibitors and tetrabenazine or valbenazine is recommended. Keyword : Deutetrabenazine, VMAT2 inhibitor, Huntington’s disease, Tardive dyskinesia.

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