Livable Lives Becomes Available Oct. 25

New book highlights stories from around the world about people impacted by Huntington’s disease

Livable Lives will be so meaningful for the Huntington’s disease community. It’s easy to take one person’s story and apply it across the whole community; but this collection will help raise awareness of the many experiences and effects of HD through the perspectives of dozens of community members from across the globe. The written experiences will also help connect others who may not be open to sharing their journeys and let them know that they are not alone. Jenna Heilman, Executive Director, HD Youth Organization

We are pleased to announce the launch of a new book about Huntington’s disease (HD) called, Livable Lives: Conversations with the Huntington’s Disease Community, by Christy Dearien, with a foreword by Jimmy Pollard.

In Livable Lives, Christy shares her own family’s HD story along with stories from around the world to explore what it means to have a family disease, how people approach the predictive genetic testing decision, and how Huntington’s disease affects relationships and major life decisions. Livable Lives also touches on topics like talking with children about the disease, providing care, and the importance of pursuing what one gene-positive young woman calls her “livable life” – a life lived with intention and meaning before HD symptoms begin.

Livable Lives is based on Christy’s conversations with 32 people from 10 countries across five continents. Storytellers include eight people who are at risk of inheriting Huntington’s disease, eight who have undergone predictive genetic testing and know they are gene positive, five who have tested gene negative, and seven who are a parent, spouse, and/or partner of someone impacted by the disease. Other storytellers include HD researchers and a nonfamily care provider.

These collective stories matter because living with a rare genetic disease that affects the entire family can be incredibly isolating, especially for those who have little or no access to support and care, or for those who live in a family or country where it is unacceptable to speak openly about the disease. Few people outside the HD community know about Huntington’s disease and how it impacts families and individuals, and this lack of knowledge has a direct impact on how people with the disease are perceived by others. Raising awareness of Huntington’s disease is imperative to increasing understanding and compassion, reducing stigma, and improving care for loved ones with Huntington’s disease.

Many people in the HD community are active volunteers and advocates. Several Livable Lives storytellers, for example, volunteer for organizations like the Huntington’s Disease Youth Organization (HDYO), the Huntington’s Disease Community Advisory Board (HD-CAB), and the Huntington’s Disease Coalition for Patient Engagement (HD-COPE), as well as their local or national HD organizations.

Huntington’s disease is a rare neurodegenerative disease that has an oversized impact on affected individuals and families. A person with Huntington’s disease experiences physical and cognitive decline along with significant changes in mood and behavior that typically start in middle age but may begin in childhood or old age. Every naturally conceived child of a parent who has the genetic mutation that causes Huntington’s disease has a 50-50 chance of inheriting it themselves, and many children who are at risk of having the disease cope with becoming a young caregiver for their parent while grappling with their own risk of developing the same disease one day. Huntington’s disease has a long history of stigmatization.

Fifty percent of the author’s net proceeds from book sales will be donated to HDYO.

Buy Livable Lives on Amazon today! Available as an eBook and paperback at https://amzn.to/3zTWVg9

For more information: Email Christy at HDLivableLives@gmail.com Visit https://www.christydearien.com Check out @christydearien on Instagram

To request a review copy of the book, please email Christy at HDLivableLives@gmail.com

PRAISE FOR LIVABLE LIVES

“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, The Hidden No More Foundation, and Emmy Award-winning journalist

“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, it makes the reader think about how we can care for one another, as well as the limits of caring. I can’t recommend it highly enough as a window into the world of Huntington’ disease, and, more generally, human suffering, dignity, and resilience.” - Karen Elta Anderson, MD, Director, Georgetown MedStar Huntington Disease Care, Education and Research Center, an HDSA Center of Excellence

“Personal stories are incredibly important. They’re especially valuable when the subject is surrounded by stigma, as is the case with Huntington’s disease. Sharing stories in this way is an act of generosity. It helps others learn about this complex disease, identify coping strategies, and above all, understand that they are not alone.” - Svein Olaf Olsen, President, International Huntington Association

“A wonderful collection of stories that sheds light on what it’s actually like to live with Huntington’s disease and that offers poignant examples of how we can all live our own Livable Lives.” - Erin Paterson, Author of All Good Things and Huntington’s Disease Heroes