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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: 0.9 x 16.5 x 23.2 cm
  • Shipping Weight: 259 g
  • Average Customer Review: 5.0 out of 5 stars  See all reviews (1 customer review)
  • Amazon Bestsellers Rank: #181,063 in Books (See Top 100 in Books)
  • See Complete Table of Contents


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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.
i did not really enjoy this book that much. it did not help ,me understand the illiness at all March 27 2014
By Lisa Culp - Published on Amazon.com
Verified Purchase
i did not like this book, that is why I choose a 2 for it. I would not suggest anyone else buy it either.
Love the book! Love the Family!!! Aug. 22 2012
By Melanie - Published on Amazon.com
Format: Paperback
This book is one of my favorites. It made me laugh and it made me cry. It is nice to know that your not alone in this scary world of HD. I Would Love to see an update on the whole 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.

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