Learning to Live With Huntington's Disease: One Family's Story (Paperback)

~ Sandy Sulaiman (Author)
Key Phrases: mopping the ceiling, Johnny Depp, Chipping Norton, Whitley Bay

Editorial Reviews

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.

Product Details

• Paperback: 176 pages
• Publisher: Jessica Kingsley Publishers; 1 edition (May 15, 2007)
• Language: English
• ISBN-10: 1843104873
• ISBN-13: 978-1843104872
• Product Dimensions: 9 x 6.1 x 0.6 inches
• Shipping Weight: 9.1 ounces (View shipping rates and policies)
• Average Customer Review: 5.0 out of 5 stars  See all reviews (2 customer reviews)
• Amazon.com Sales Rank: #421,087 in Books (See Bestsellers in Books)

Customer Reviews

Most Helpful Customer Reviews

7 of 7 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)

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

5.0 out of 5 stars Amazing, January 8, 2010

By	Victor Saldana "Vincent Saldana" (Marengo IL) - See all my reviews (REAL NAME)

Amazon 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!