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

4 May 2010
By Dr Vivienne Raper
Science editor, BioNews
Appeared in BioNews 556

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

By Sandy Sulaiman

Published by Jessica Kingsley Publishers

ISBN-10: 1843104873, ISBN-13: 978-1843104872

Buy this book from Amazon UK

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

Author Sandy Sulaiman, who has  Huntington's, and her close family make the book a joy to read and not just because they're its stars. Her daughter-in-law describes the family as 'journalists or natural born writers'. Each family member contributed a chapter describing how Huntington's affects their life, and the book's power comes from the clarity, emotion and frankness of their writing. It's like reading an issue of Heat or SHE magazine.

Several patient websites I visited raved about the book and it's little wonder. Huntington's is a horrible disease, but the family are so upbeat they're bound to inspire others. The book is littered with humour in adversity. Take this story by Sandy's eldest son Bromley:

'We had all just walked into the living room... Danny, my brother, was standing by the main light switch on the wall. I was standing in front of him talking to mum. Before I go on, you have to understand mum has a tendency to unexpectedly jerk forwards or backwards and head-butt innocent bystanders, not on purpose (at least I think not), but due to HD [Huntington's Disease].

'So I was unexpectedly head-butted. As a reflex, my head shot back into my brother's head. His head then flew back and hit the light switch. The lights went out. We stood in the darkness, shocked at what had happened, with at least two of us nursing a bumped head and wondering if everything going black meant concussion had set in. Mum was first to break the silence. 'Why did you turn the lights out, I was talking to you?' she said...'

The story is littered with such gems, including jokes about ketchup ending up on ceilings and the average lifespan of a toilet seat. The book explains that Huntington's affects fine motor control so Sandy applies the same force to a cup as to a car door, with predictable results.

Beyond the slapstick, the writing is often heart-wrenching. Sandy and Bromley writing about the day her driving licence was taken away is deeply moving. The shadow hanging over the family's life is palpable.

Much more than a first-person tear-jerker though, the book informs as it entertains. For people as clueless about Huntington's as I was, the Introduction rams the horror home. Sandy describes it as having 'the physical effects of Parkinson's Disease mixed up with the mental deterioration of Alzheimer's... It's terminal, but it takes its time, decades sometimes'.

She outlines the symptoms - gradual mental, emotional and physical decline coupled with personality changes, a cumulative loss of autonomy and the ongoing worry of it being passed on to your descendants. She says it's like 'being hit by a series of punches from a heavyweight boxer'.

Beyond the symptoms themselves, almost every aspect of being a member of a family with Huntington's is covered. Bromley writes about his difficult adolescence after discovering the family had HD. Bromley's wife, Chantel, explains her decision to marry him, despite knowing he could develop Huntington's. Sandy's sister Wendy describes how she feels being the only child of three who didn't inherit the Huntington's gene.

So who would I recommend this book to? Well, it boasts recommendations to patients, relatives and healthcare professionals. Appealing to such a wide audience seems like a tall order but, after reading it, the book succeeds. It's as readable as Cosmo and as informative as a textbook. Funny, harrowing and thought-provoking in equal measure, it should be on the reading list of anyone with the slightest interest or involvement in Huntington's Disease.

Buy Learning to live with Huntington's Disease: One Family's Story from Amazon UK.

3 August 2015 - by Dr Victoria Burchell 
A genome-wide study of over 4000 people with Huntington's disease has identified the location several new gene variants that influence the onset of disease symptoms...
23 February 2015 - by Sean Byrne 
Do you really want to know? This was the question presented in the award-winning documentary of the same title, and to the panel in a discussion that followed its recent screening by Genetic Alliance UK...
5 July 2010 - by Dr Jay Stone 
Two papers published in the Lancet have suggested that the number of people in the UK suffering with Huntington’s disease (HD) may be double original figures and that patients are failing to be diagnosed due to the stigma attached to the illness...
24 January 2010 - by Charlie McDermott 
A nursing director from the UK's National Health Service (NHS) has issued a public apology to a patient - known as Mr C - and his family after he had been misdiagnosed with Huntington's disease (HD) for almost 20 years. The original genetic test for HD was issued in 1989, when Mr C was in his early 30s, and carried a four per cent chance for false positives. It is believed that Mr C fell into this four per cent and his case has been described as 'extremely rare, if not unique',...
7 September 2009 - by Ailsa Stevens 
Clinicians should be cautious about offering genetic testing to patients at risk from Huntington's disease to enable them to participate in clinical trials, Dr Sheila Simpson, a Clinical Geneticist at NHS Grampian Hospital, said in a talk at the annual conference of the British Society of Human Genetics at Warwick University....
2 August 2009 - by Rosie Beauchamp 
A paper published in the 'Proceedings of the National Academy of Sciences' has outlined disappointing conclusions surrounding the use of brain tissue transplants to treat Huntington's disease. Thomas Freedman and colleagues at the University of South Florida in Tampa, US, report that transplanting portions of fetal brain tissue is not as successful as was previously believed....
15 June 2009 - by Dr Sarah Spain 
A study by researchers at the University of British Columbia in Canada and published in the British Medical Journal has shown that individuals at risk of Huntington's disease (HD) are often discriminated against by insurance companies, and also by their own relatives and friends. They also found that this discrimination was based on family history of the disease rather than any genetic test results....
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