NOW AVAILABLE

Livable Lives captures the variety of experiences that come with Huntington’s disease, as told through stories from the HD Community.

50 percent of all net book sale proceeds will be donated to the Huntington’s Disease Youth Organization

PRAISE FOR LIVABLE LIVES

“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

“I am deeply touched by the commitment that Christy Dearien has for patients and family members affected by Huntington's disease; her empathy and efforts at providing education and hope for an effective treatment is a lifeline to many HD families and friends and serves as a revelation to those who are not familiar with this devastating disease.”  

— Gary L. Dunbar, Ph.D. | HD researcher, Livable Lives storyteller

“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

A global conversation…

With over 30 people from 10 countries on five continents.

Covering important HD topics…

Such as what it means to have a family disease, how Huntington’s disease affects relationships and major life decisions, the genetic testing decision, and where people find hope and meaning.

From multiple perspectives…

Including people who are at-risk, gene-positive, or gene-negative, plus family members, researchers, and care providers.

LIVABLE LIVES STORYTELLERS

  • “I hope this book helps the HD community and general public understand more about Huntingtons' disease and what it is like living as a carer and at-risk. I hope it can empower, inspire, and educate people. I am so excited - I struggle to find the words. I can't wait to hold this book in my hands.”

    -Ashley, at risk

  • “I hope that those in the HD community understand that they are not alone after reading the book. I also hope that others not personally impacted by HD have a better understanding of what it is like to be a caregiver, sibling, and someone at-risk for HD. 

    I have found that 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

  • “I am deeply touched by the commitment that Christy Dearien has for patients and family members affected by Huntington's disease; her empathy and efforts at providing education and hope for an effective treatment is a lifeline to many HD families and friends and serves as a revelation to those who are not familiar with this devastating disease.”

    — Gary L. Dunbar, Ph.D., HD researcher

  • “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

  • “I found talking about my experience more difficult than I thought it would be, but I knew sharing my story with Huntington’s disease could be helpful to someone else. When my mom was first diagnosed, my dad and I went to a support group where we found a community. The people we’ve met through the Huntington’s Disease Society of America and their stories have been so enlightening. Reading and learning about HD helps us better care for my mother and not feel like we’re going through this alone. I’m grateful for Christy writing this book because I know it’s going to make a difference.”

    —Abby, gene-negative

Livable Lives sheds light on a rare disease community.

By far, other people’s stories have helped me understand Huntington’s disease in a way that clinical descriptions have not. And yet, a basic understanding of the disease, its symptoms, and its history is essential to grasping its impact on families. Huntington’s disease (HD) is often described as having symptoms in common with Alzheimer’s, Parkinson’s, ALS, and mental illness – all at the same time. Every child of a parent with Huntington’s disease has a 50-50 chance of inheriting it themselves, which sets the stage for a complicated life.

It can be difficult to explain Huntington's disease to someone who doesn't know anything about it, especially if you want them to understand the nuances of having the disease in your family. Livable Lives provides a starting point for conversations with people outside the HD community to help them understand the complexities of this family disease.

From my own experience, I know that hearing stories from people who share similar experiences goes a long way toward feeling less isolated and alone. Livable Lives tells a collective HD story that combines many voices and experiences of Huntington’s disease in a personal and meaningful way. Conversations explore big life questions, such as how to make plans for a future that might be cut short, whether to seek out genetic testing to reveal what lies ahead, when and how to tell kids they are at-risk, and whether there is hope in what can seem like a hopeless situation.

Above all, these conversations reveal the importance of pursuing a livable life – a life lived with intention and meaning.

Photo of two spiral staircases that resemble a DNA helix