Learning to Live with Huntington's Disease: One Family's Story

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Jessica Kingsley Publishers, Apr 15, 2007 - Health & Fitness - 176 pages

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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I love this book, my mom had HD before she passed also. I can relate to so much of this, I'm going to recommend this book to the local HD chapter!!!!!


Sandys Story
2 The Lucky One? The Sisters Story
The Older Sons Story
4 Is Everyone All Right? The Younger Sons Story
The Daughterinlaws Story
The Husbands Story
Brians Story
8 Tips for Living with Huntingtons Disease

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Page 14 - The world breaks everyone and afterward many are strong at the broken places. But those that will not break it kills.
Page 9 - Each child of an affected parent has a 50% chance of inheriting the disease and of developing some stigmata of NF (59).
Page 2 - Law, Rights and Disability Edited by Jeremy Cooper ISBN 978 1 85302 836 6...

About the author (2007)

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.

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