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Livable Lives: Conversations with the Huntington's Disease Community
 
Livable Lives: Conversations with the Huntington's Disease CommunityChristy DearienPaperback"An unvarnished look at how Huntington's disease impacts the entire family. This book is for anyone who wants a better understanding of what it is like to live in a family with an inherited brain disease. Conveyed with compassionate and honest writing.... I can't recommend it highly enough..." * Karen Elta Anderson, MD, Director, Georgetown MedStar Huntington Disease Care, Education, and Research Center "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 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 their 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. *** 50% of the author’s net proceeds will be donated to the Huntington's Disease Youth Organization, 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 "I hope this book helps the HD community and general public understand...what it is like living as an at-risk carer. I hope it can empower, inspire, and educate people. Christy has 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. Sharing my family’s story was very freeing, especially since I kept HD a secret for most of my life. It’s very empowering to share this part of myself 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!
Livable Lives: Conversations with the Huntington's Disease CommunityChristy DearienEbook"An unvarnished look at how Huntington's disease impacts the entire family. This book is for anyone who wants a better understanding of what it is like to live in a family with an inherited brain disease. Conveyed with compassionate and honest writing.... I can't recommend it highly enough..." * Karen Elta Anderson, MD, Director, Georgetown MedStar Huntington Disease Care, Education, and Research Center "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 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 their 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. *** 50% of the author’s net proceeds will be donated to the Huntington's Disease Youth Organization, 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 "I hope this book helps the HD community and general public understand...what it is like living as an at-risk carer. I hope it can empower, inspire, and educate people. Christy has 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. Sharing my family’s story was very freeing, especially since I kept HD a secret for most of my life. It’s very empowering to share this part of myself 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!
Huntington's Disease Youth Organization Hangout | Facebook
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