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Conversations with the Huntington’s Disease Community

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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 – a rare and progressive genetic disease with a long list of physical, cognitive, and behavioral symptoms. Learning that she and other family members might also develop this disease turned her world upside down.

In Livable Lives, Christy tells her story along with stories from around the globe to explore how an incurable family disease impacts relationships, identity, life decisions, and more. Her conversations with others revealed the importance of pursuing what one gene-positive young woman calls her “livable life” – a life lived with intention and meaning before symptoms begin.

“Livable Lives is a major step toward bringing Huntington’s Disease out of the shadows.”

-Charles Sabine, OBE | Founder, The Hidden No More Foundation, and Emmy Award-winning journalist

“I can’t recommend [Livable Lives] 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 

Christy Dearien

Author

Hi, I’m Christy!

While Livable Lives is based on numerous conversations and in-depth research, my decision to write this book stems from my desire to understand my own family’s HD story. By sharing my family’s HD story along with stories from around the world, I hope to tell a more complete HD story that can help the HD community feel less alone, educate the people around us, and encourage ongoing conversations about this challenging disease.

  • Livable Life

    /ˈlivəb(ə)l līf/ (noun)

    1 The period when a gene-positive or at-risk person can live the life they want to live before HD symptoms appear.

    2 A life lived with intention and meaning in response to an uncertain or daunting future.

    3 A high quality of life for loved ones who have Huntington’s disease.

  • The term “livable life” captures how people approach a life that includes HD.

    For some, a livable life means doing things they want to do now since they might not be able to do them later, or making decisions ahead of time to prepare for what’s coming. For others, a livable life means finding ways to cope with the difficulties of Huntington’s disease, or advocating for better care for a loved one with the disease.

  • "I call it my livable life, where I'm able to do everything I want to do."

  • "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

  • What does a Livable Life mean to you?

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