Learning to Live With Huntington's Disease: One Family's Story [Paperback]

Sandy Sulaiman (Author)

Book Description

Publication Date: May 15, 2007 | ISBN-10: 1843104873 | ISBN-13: 978-1843104872 | Edition: 1

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.

Editorial Reviews

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.

Product Details

• Paperback: 176 pages
• Publisher: Jessica Kingsley Pub; 1 edition (May 15, 2007)
• Language: English
• ISBN-10: 1843104873
• ISBN-13: 978-1843104872
• Product Dimensions: 9.3 x 6.6 x 0.4 inches
• Shipping Weight: 9.1 ounces (View shipping rates and policies)
• Average Customer Review: 4.2 out of 5 stars  See all reviews (4 customer reviews)
• Amazon Best Sellers Rank: #871,164 in Books (See Top 100 in Books)

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Customer Reviews

Most Helpful Customer Reviews

8 of 8 people found the following review helpful:

5.0 out of 5 stars A book for all involved who live with Huntington's Disease!, December 1, 2007

By 

Jean E. Miller "Jean E. Miller" (Clearwater, Florida USA) - See all my reviews
(REAL NAME)   

This review is from: Learning to Live With Huntington's Disease: One Family's Story (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: http://get-me.to/hdlinks

3 of 3 people found the following review helpful:

3.0 out of 5 stars The Emotional Side of HD, May 30, 2010

By 

A. Adams - See all my reviews
(REAL NAME)   

Amazon Verified Purchase

This review is from: Learning to Live With Huntington's Disease: One Family's Story (Paperback)

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.

4.0 out of 5 stars Great source of strength to keep close by!, March 22, 2011

By 

JL "jL" (San Jose, CA) - See all my reviews

Amazon Verified Purchase

This review is from: Learning to Live With Huntington's Disease: One Family's Story (Paperback)

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!