Bokus
Sandy Sulaiman - Learning to Live with Huntington's Disease, E-bok

E-bok, Engelska, 2007

Learning to Live with Huntington's Disease

One Family's Story

Av Sandy Sulaiman

317 kr

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Beskrivning
Huntington's Disease (HD) is a hereditary illness passed on via a defective gene. There is a fifty per cent chance of inheriting it from a parent and there is yet no cure. Learning to Live with Huntington's Disease is one family's poignant story of coping with the symptoms, the diagnosis and the effects of HD.This book presents the struggles and strengths of the whole family when one member loses their future to a terminal illness. Told by the sufferer and other significant family members, the individuals describe the burden of watching yourself and others for symptoms of HD, including involuntary movements, depression, clumsiness, weight loss, slurred speech and sometimes violent tendencies. The family recounts the challenge to remain united and describes how they approached issues such as whether or not to be tested for HD, how much information to disclose to relatives, whether to have children or not and guilt if one sibling inherits the illness and one does not. Both honest and positive, the author stresses the importance of re-inventing yourself and your present, prioritising relationships and retaining a sense of humour.
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Sandy Sulaiman has been a journalist for 20 years, with articles published in most UK national newspapers, as well as specialist publications and women's magazines. She was diagnosed with Huntington's disease seven years ago. Sandy lives near Banbury, Oxfordshire, UK.

Recensioner i media

Any counsellor might find themselves working with one or more of the six co-authors of this self-help book: Sandy, a journalist in her mid-40s who has Huntington's disease, her second husband; two sons, aged 25 and 15; her daughter-in-law and sister. Their accounts vividly describe the impact of Huntington's disease and their determination to live as fully as they can. Learning to Live with Huntington's Disease highlights feelings and issues relevant to a wide range of situations, especially where secrecy and denial are involved. As I learnt long ago from a young client in a hospice, even if you are free of the gene, nobody in a family with Huntington's disease escapes the illness.

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