Livable Lives: Conversations with the Huntington’s Disease Community
$16.99
Livable Lives is an essential read for anyone interested in understanding Huntington’s disease, the personal and emotional impacts of predictive genetic testing, and living an intentional life.
Christy Dearien first learned the name of the disease that has affected her family for generations when her brother was diagnosed with Huntington’s disease (HD) – a rare and progressive genetic disease with a long list of physical, cognitive, and behavioral symptoms. Learning that she and other members of her family might also develop this disease turned her world upside down.
In Livable Lives, Christy tells her family’s story along with stories from around the globe to explore how an incurable family disease impacts relationships, identity, major life decisions, and much more. In her conversations with the HD community, people talked about the importance of pursuing what one gene-positive young woman calls her “livable life” – a life lived with intention and meaning before symptoms begin.
Fifty percent of the author’s net proceeds from the sale of this book will be donated to the Huntington’s Disease Youth Organization (hdyo.org), an international nonprofit that supports, educates, and empowers young people impacted by Huntington’s disease.
PRAISE FOR LIVABLE LIVES
“I wanted to share my story to let people know that they are not alone. And no matter your genetic results, you have to live your livable life to the fullest, because tomorrow is never guaranteed.”Brianna, gene positive, Livable Lives storyteller
“Huntington’s disease presents a unique set of challenges, and compounding every single one of them is the fact that it remains so hidden. Livable Lives is a major step toward bringing it out of the shadows.”Charles Sabine OBE, Founder of the Hidden No More Foundation, and Emmy Award-winning television journalist
“I hope this book helps the HD community and general public understand more about Huntington’s’ disease and what it is like living as an at-risk carer. I hope it can empower, inspire, and educate people. I can’t wait to hold this book in my hands! Christy has worked incredibly hard, and put love, care, and attention into this book. We weren’t just people who had a story to share, we were friends and family, all connected by Huntington’s disease.”Ashley Clarke, at risk, Livable Lives storyteller
“Personal stories are incredibly important, especially when the subject is surrounded by stigma, as is the case with Huntington’s disease in some families and cultures. Sharing stories is an act of generosity. It helps others learn about this complex disease, identify coping strategies, and above all, understand they are not alone.”Svein Olaf Olsen, President, International Huntington Association
“I hope those in the HD community understand that they are not alone after reading this book. Being able to share my family’s story is very freeing, especially since I kept HD a secret for most of my life. It’s very empowering to be able to share this part of me with others and reflect on how far I have come despite the challenges that HD has brought me.”Ella, at risk, Livable Lives storyteller
“In Livable Lives, Christy weaves her own story amidst the stories of others from around the world whose lives are touched by Huntington’s disease. Within their personal stories there is loss, grief, suffering, and heartbreak. At the same time, there is happiness, gratitude, humor, resilience, and appreciation. Hence, livable lives.”Jimmy Pollard, HD activist and author of Hurry Up and Wait!
ASIN : B0DJWSW3ZB
Publisher : Christy Dearien
Publication date : October 9, 2024
Language : English
Print length : 274 pages
ISBN-13 : 979-8991500302
Item Weight : 14.3 ounces
Dimensions : 6 x 0.69 x 9 inches
Best Sellers Rank: #263,751 in Books (See Top 100 in Books) #49 in Genetic Health #253 in Sociological Study of Medicine #8,347 in Memoirs (Books)
Customer Reviews: 5.0 5.0 out of 5 stars 15 ratings var dpAcrHasRegisteredArcLinkClickAction; P.when(‘A’, ‘ready’).execute(function(A) { if (dpAcrHasRegisteredArcLinkClickAction !== true) { dpAcrHasRegisteredArcLinkClickAction = true; A.declarative( ‘acrLink-click-metrics’, ‘click’, { “allowLinkDefault”: true }, function (event) { if (window.ue) { ue.count(“acrLinkClickCount”, (ue.count(“acrLinkClickCount”) || 0) + 1); } } ); } }); P.when(‘A’, ‘cf’).execute(function(A) { A.declarative(‘acrStarsLink-click-metrics’, ‘click’, { “allowLinkDefault” : true }, function(event){ if(window.ue) { ue.count(“acrStarsLinkWithPopoverClickCount”, (ue.count(“acrStarsLinkWithPopoverClickCount”) || 0) + 1); } }); });
Amazon Customer –
Detailed insight into the complexities of Huntington’s disease
Christy did an amazing job compiling the stories of so many individuals while weaving her story throughout the book. The intimate experience of HD can be hard to capture, but Christy did a wonderful job explaining the complexities of the disease and how it impacts not only those with HD but also their entire family. This book is a great resource for those looking to learn more about what it is like to live with HD. I highly recommend it to not only those within the community but also professionals, friends, and others who support those impacted by HD or are curious to learn more about this disease. Also, Christy is donating fifty percent of the net proceeds to HDYO, which is phenomenal resource for youth impacted by HD that has played a pivotal role in many young people’s lives.
Sean’s family –
Incredibly well written & researched book, must read
Christy has done an incredible job weaving in so many HD stories, including her family’s, with important and well-researched information about this family disease. She shows the very human side of early disease symptoms which often go undiagnosed, or misdiagnosed, and untreated leading to confusion about a changing loved one and altered relationships. She also thoroughly explores the very complicated question about decisions to test, or not, and how that affects someone’s life. Being close to an HD family for many years, I thought I had a basic understanding of the disease but I learned so much more about what it is really like to navigate this complex disease and all the challenges it poses. Extremely well written book and a must read!
S. Mnsn –
A Book for All
This book offers an incredible resource and support for those whose lives have been touched by Huntingtons Disease. However, I feel it is an important book for everyone – as we learn not only about a little known disease that affects so many, but also an understanding that we don’t always know what someone is going through, and how everyone processes emotions such as grief in many different ways . I learned how I can offer empathy and how to support to those going through something I may not fully understand. Livable Lives is a beautifully written book, engaging and informative. Highly recommend.
Graylex –
Powerful, Emotional, and Educational
Livable Lives provides insight into the complex individual and family experiences for those affected by Huntington’s Disease. The author shares her own experience navigating the world after learning she was at risk for Huntington’s Disease. Along the way, you’ll learn about Huntington’s Disease and hear the highly personal and always moving stories that the author gathered from interviews with people who have family members with Huntington’s or who are at risk or have tested positive for it. Their generosity and openness in sharing their lived experiences is a gift for everyone, whether your family may be dealing with Huntington’s or other similar diagnoses. I highly recommend this book, especially if you or a friend or loved one find yourself in need of easy-to-understand information, real-life stories, and a sense of how to create a livable life when touched by Huntington’s.
Dee –
This is, at least an important work, and is probably often a vital work.
Meticulously written and easily read. Dearien offers very personal lifetimes of experience to readers in and outside the HD community. These experiences offer options and empowerment to people who likely feel isolated and misunderstood. In addition, readers outside the HD community will gain a wealth of knowledge about the disease and learn what amazing things REAL people are capable of when placed in extraordinary circumstances.
Frani –
An excellent book
This book is a great read and it covers an important and under-examined subject. I learned so much but I also found the book easy to read and very relatable.
IstaOfChalion –
The best intro to what having Huntington’s disease means
Huntington is a disease that devastates families, up and down through generations and across sibling and cousin cohorts. Dearien spent two years interviewing members of the Huntington community worldwide, then careful wrote THE book anyone would want as an introduction to the complex relationships, futures, and losses that come from being touched by Huntington.Dearien lets the voices of individuals be heard, but also does more than document their stories. She looks at the complexities of being included in the Huntington community and offers thoughtful, skillfully drawn comments. This is a book for everyone, even those not touched by this specific disease. Dearien has the reader think about what a liveable life means for people in this community, but the question — What does “a liveable life” mean to you? — is a question for us all.
Tenleyb –
An insightful, well-written and researched book about the Huntington’s Disease family experience
Between her own experience and research and the many interviews, Christy has a deep knowledge of the Huntington’s Disease community which comes to life with very relatable storytelling. The strength of the family bond comes through with the sharing of her journey discovering she belongs to an HD family plus all the incredible people she interviewed. This is an amazing read which I highly recommend.