Customer Reviews

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

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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

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.

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!

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!