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Learning to Live with Huntington's Disease: One Family's Story Paperback – Apr 15 2007

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Product Details

  • Paperback: 176 pages
  • Publisher: Jessica Kingsley Publishers Ltd; 1 edition (April 15 2007)
  • Language: English
  • ISBN-10: 1843104873
  • ISBN-13: 978-1843104872
  • Product Dimensions: 15.2 x 1 x 22.9 cm
  • Shipping Weight: 259 g
  • Average Customer Review: 5.0 out of 5 stars  See all reviews (1 customer review)
  • Amazon Bestsellers Rank: #618,784 in Books (See Top 100 in Books)
  • See Complete Table of Contents

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.

`It's as readabale 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.`- bionews'Any counsellor might find themselves working with one or more of the six co-authors of this self-help book: Sandy, a journalist in her mid-40s who has Huntington's disease, her second husband; two sons, aged 25 and 15; her daughter-in-law and sister. Their accounts vividly describe the impact of Huntington's disease and their determination to live as fully as they can. Learning to Live with Huntington's Disease highlights feelings and issues relevant to a wide range of situations, especially where secrecy and denial are involved. As I learnt long ago from a young client in a hospice, even if you are free of the gene, nobody in a family with Huntington's disease escapes the illness.'- Healthcare Counselling and Psychotherapy Journal, October 2007'Learning to Live with Huntington's Disease is a moving and informative account of one families experience of the condition. The accounts from all the book's contributors describe the emotional issues that can arise from being diagnosed with or having a loved one diagnosed with Huntington's disease, which provides those without first hand experience of living with the condition, some insight into what it is like. This book is very reader friendly, as it avoids complex terminology, making it well tailored for patients, relatives and healthcare professionals. Whilst the content of the book touches upon the cruel realities of living with Huntington's, some parts are quite optimistic and provide advice on ways of coming to terms with the challenges the condition brings.'- Linchpin, Derian Children's Hospice 'This is a moving true story of how people can find the inner strength to rise above it when their world is turned upside down.'- Richard Branson'Remarkable!a These "stories from the heart" are able to penetrate even the thickest of fogs that accumulate during the dark times in life.a Profound personal insight is shared in a way that challenges all of us to work through the pain and isolation that accompanies stress to build a life worth living.aI recommend this work of hope to everyone... HD families, health care workers, scientists, as well as the parents, siblings, spouses, and friends of all who face a health challenge.The candid stories offer distinct perspectives on living from many vantage points, be it the person with a terminal illness, the lucky survivor, the parent, the spouse, or the child.a This family inspires us all to examine our broken edges as a means to healing, hope and strength.The prose depicts the clinical phenotype of Huntington's disease with a candor reminiscent of Oliver Saks' neurological teachings.a Key components of the disease such as denial, unawareness, depression, motor unpredictability, the childhood capacity for coping, individual differences in addressing the unknown, and mindfulness are depicted with clarity.a The reader is encouraged to think outside of the box when faced with apparent somber consequences.a For instance, when forced to give up her independence via her drivers' license, Sandy brilliantly rekindles an old love and develops equine physiotherapy to safely exercise and revisit independence. I can't thank you all enough for the uplifting read I have had todaymy week, and perhaps my year of work in HD, will certainly be better for it.'- Jane Paulsen, Professor of Psychiatry, Neurology, Psychology and Neurosciences, The Carver College of Medicine, The University of Iowa

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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Most helpful customer reviews

By Marlie234 on Nov. 16 2012
Format: Paperback Verified Purchase
This book describes all the different ways that Huntington's Disease affects a family by looking at the disease from the viewpoints of different members of one family. This well written book is direct, descriptive, and maintains a wonderful balance of emotional and factual information.
It is interesting to see how the undiagnosed disease affected the family in an earlier generation in a much different way than it appears to be affecting the current generation that is dealing with a the disease having both a diagnosis and a better understanding of the disease. I wish the family well and I admire their outlook on living the days that life gives us to their fullest.
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Most Helpful Customer Reviews on Amazon.com (beta)

Amazon.com: 7 reviews
11 of 11 people found the following review helpful
A book for all involved who live with Huntington's Disease! Dec 1 2007
By Jean E. Miller - Published on Amazon.com
Format: Paperback
So many people have written rave reviews to the Sulaiman's and the publisher on this book, I was surprised not to see any posted under Amazon's book review!

Huntington's Disease has been so intricately entwined into the fabric of my life since the early 1980's when my only child, Kelly, was diagnosed with the Juvenile form of this devastating disease. Throughout Kelly's life, and since her death at age 30 to complications of JHD in 1998, I have been deeply involved in trying to help families living with Huntington's Disease by providing resources and support where I can. "Learning to Live With Huntington's Disease: One Family's Story" is one of the best non-fictional books on HD to be written since Carman Leal's "Faces of Huntington's" was published in 1998! Whether you are a professional involved in providing support to HD families, a person diagnosed with HD, a young person growing up in an HD family, a person at-risk for inheriting the disease, a friend or a relative of a family living with HD, or a spouse thrown into the role of a "caregiver" in an HD family, each chapter in this book not only will touch your heart but will provide you with insight on how this disease affects every single aspect of the life of anyone who is living with HD!

I highly recommend reading "Learning to Live With Huntington's Disease: One Family's Story"!

Jean E. Miller
HD Patient Outreach
HDSA HD CoE at USF~Tampa, FL.
HD Links: [...]
4 of 4 people found the following review helpful
The Emotional Side of HD May 30 2010
By A. Adams - Published on Amazon.com
Format: Paperback Verified Purchase
This short book is a very poignant insight into how HD affects every member of a family. Most of the family members are not writers by profession, but you can't criticize them for speaking from their hearts. It's a devastating story to tell, and we should all be grateful that people like the Sulaimans are willing to share it. But in the end, it's important to know that this book is not a medical text and describes but one family's struggle. If you are looking for a more informative, well-rounded explanation, or if you want to know the cold, hard facts (such as physical symptoms, disease progression, prognosis, etc.), then this book is not a great starting point.

As I have said in other reviews, the body of knowledge on HD is nearly nonexistent. Oliver Quarrell's book, Huntington's Disease (The Facts), is probably the most concise introduction, and the few books authored by and about the Wexler family offer an interesting historical and personal perspective (Mapping Fate: A Memoir of Family, Risk, and Genetic Research; The Woman Who Walked into the Sea: Huntington's and the Making of a Genetic Disease; and Gene Hunter: The Story of Neuropsychologist Nancy Wexler (Women's Adventures in Science), which, although written for young adults, is advanced enough for grown-up readers as well). And of course, the consummate resource for the latest medical information on HD remains the Huntington's Disease Lighthouse, an indispensable website to which Amazon refuses to let me post a link.
Great source of strength to keep close by! March 22 2011
By JL - Published on Amazon.com
Format: Paperback Verified Purchase
I am like Sandy; HD positive except my symptoms have not begun yet. I soaked up every word she wrote. She is funny, real and left me wanting to read more of her writings. The book is written by her and her family. Each person has shared insight into the relationship they have with Sandy and the affects of the (mostly rediculous and unfair) Huntington's Disease. It contains a wide range of perspective from caregivers' insight and resources for strength to her at-risk childern speaking frankly about their decision to have genetic testing done (or not). Her HD negative sister shares her experiences as well.
Favorites about the book:
Her husband speaks about finding "faith" not hope. It reasonated and I will keep this with me.
Wish list for the book: Sandy, more Sandy! I wanted to read more of HER writings. (yes Sandy you are GOOD!)

I keep this book with me (or close by). When I'm feeling strong I reread some parts. When I'm not so strong and need a lift, I re-read her husbands section on finding faith that everything will be alright.

A book written by real people sharing such personal details about their lives.

Thank you Sandy and your family!
HD from a first hand view March 29 2012
By Rebeccap - Published on Amazon.com
Format: Kindle Edition Verified Purchase
I loved reading this book. My father has HD and I can only guess and assume how he's really feeling. This has given me a deeper insight into my Dad's real life circumstances. Thank you so much Sandy.
Amazing Jan. 8 2010
By Victor Saldana - Published on Amazon.com
Format: Paperback Verified Purchase
My mother has huntingtons before i read this book i had nothing to compare my life too i didnt know if the stages that my mother was going through were normal or not but after reading this book i finally have someone to relate too!