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Living with HD Book summary

Learning to Live with Huntington's

Learning to Live with Huntington’s. Published 2007

This book is one family’s story of learning to live with what doctors have dubbed ‘the cruellest disease known to man’.

The book will chronicle how a ‘normal’ family copes, written from the different points of view of the different members, when their world is turned upside down by a major crisis that changes their lives forever: in this case, the news that we have an inherited terminal genetic illness in the family, and are no longer ‘normal’.

We do not know of any other book that looks at the whole family perspective when a major illness or catastrophe hits; a book that takes each family member’s view in turn, in their own words.

Our brief to each other in writing this book is to be truthful and positive. Each of us has had our lives as we knew them destroyed by the news of Huntington’s Disease in the family. And each of us has had to learn how to cope and re-invent ourselves – and rebuild relations with each other.

A proportion of families with HD (and other families having to cope with catastrophic news that is ongoing) fall apart. So far we haven’t. We have each gone through upheavals and crises, though. There is a book called Skin, written from the perspective of the brother of a fictional character with anorexia. At one point in the story, the brother screams in frustration at his sister’s illness and its (unacknowledged) effects on the whole family: “This is happening to me, too, you know!”

Our book aims to speak to any family member in that kind of situation of ongoing crisis that they have to normalise and absorb as their daily life. It can be a slow motion car crash in which everyone is gradually diminished and family ties unravel due to the inexorable progress of the illness and their inability to stop it.

Or it can lead to the discovery of previously unknown strengths, family members turning to each other instead of away from each other and creating a new future to replace the ‘normal’ one they are left grieving for. Our story started off looking like the former. We feel it is now closer to the latter.

Learning to Live With Huntington’s Disease: One Family’s Story published by Jessica Kingsley Publications,  2007