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Product Description
Product Description
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.
About the Author
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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9 of 9 people found the following review helpful
Format:Paperback
Hi, my family has Huntington's Disease in it so I bought this book because I thought I OUGHT to read it- I'm now passing it around the family because I think everyone will WANT to read it. It's positive without glossing. It's earthy without being brutal. Its genius lies in the fact that everyone going through the trauma surrounding this disease comes from a different angle according to whether they're a sufferer, at risk, on-looker or carer- or at various stages in their lives all four. this book helped me to understand the frustrations and comforts of everyone elses' perspectives. Mind-broadening stuff, highly-recommended.
1 of 1 people found the following review helpful
Format:Paperback
This book was bought for my mum whose father died of Huntingtons. She said its very informative and explains things really simply and easily without being negative. A good buy for anyone who needs to understand Huntingtons.
Format:Paperback
I borrowed this book from the library and I am going to buy a copy so our families and friends can read it too. This book made me feel stronger as I am newly getting used to looking after someone with Huntington's Disease. The book is extremely well written and has helped me come to terms with my husband's diagnosis of HD. It has helped me understand a lot about the disease. A tremendous insightful book about a complex disease. Highly recommended.
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