Learning to live with Huntington’s disease: one family’s story Sandy Sulaiman

Learning to Live with Huntington’s Disease is one courageous family’s poignant story of coping with the diagnosis, the symptoms and the effects on family life of Huntington’s Disease (HD), an incurable hereditary illness. Sandy and members of her close family speak frankly about coping with the symptoms of a progressive, ultimately terminal, illness as those symptoms emerge; including involuntary movements, depression, clumsiness, weight loss, slurred speech and sometimes violent outbursts. The family describe the challenge of remaining united, and 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 the feelings of guilt experienced by siblings who do not inherit the illness. Both honest and positive, the author stresses the vital importance of re-inventing yourself and your present, prioritising relationships and retaining a sense of humour. Inspiring and supportive, Learning to Live with Huntington’s Disease is essential reading for medical practitioners and researchers, psychologists, occupational therapists and rehabilitation specialists as well as individuals with HD and their families and friends. Book jacket.

Source: Google Book



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