Living With Huntington’s: Inheriting Risk, Finding Purpose

Episode Summary In this powerful episode of Amplify, hosts Ursula Mann and Christina Pisapia speak with Erin Paterson, a writer, caregiver, and advocate whose life was transformed by Huntington’s Disease (HD). Just as Erin and her husband were preparing to start a family, she learned a long-kept family secret: her grandmother may have died from Huntington’s. This revelation pushed Erin into rapid genetic testing, where she tested gene-positive. What followed was a decade-long struggle with depression, infertility, caregiving responsibilities, and fear of the future. But Erin rebuilt her life through writing, community, caregiving, and storytelling. Today, she advocates globally for people living with rare diseases and cares for her father, who is now in his 80s with late-onset HD. Her story is one of courage, connection, and the quiet beauty of finding purpose—even when living with uncertainty.  Why You Should Listen This episode is for you if you: Work in healthcare and want to understand how to deliver compassionate, human-centered care for people with neurological and rare diseases. Support a loved one with chronic illness and want to hear how another caregiver navigates emotional, logistical, and generational challenges. Are navigating inherited risk, fear of the unknown, or the emotional weight of a diagnosis—personally or within your family. Believe in the power of storytelling, community, and advocacy to transform pain into purpose. Want to hear how small acts of joy and presence can sustain connection—especially when speech and movement change. You’ll walk away with a deeper understanding of Huntington’s disease, the importance of slowing down in care settings, and how love and community can reshape even the hardest realities.  Episode Highlights 00:00 — Understanding Huntington’s Disease A clear, human explanation of what HD is and why lived experience is essential. 02:35 — A family secret revealed Erin shares the unexpected moment that changed the course of her life. 03:57 — Facing a life-altering diagnosis How Erin processed the news and what the early emotional impact looked like. 08:28 — Becoming a caregiver What it meant to step into supporting her father as HD progressed. 09:46 — Advocacy in the healthcare system Erin reflects on what patients and families often need—but don’t always receive. 13:24 — Rebuilding after a difficult season The small, intentional practices that helped her slowly find her way forward. 15:49 — Transforming pain into purpose How writing, publishing, and community shifted Erin’s path. 28:34 — Connection beyond words A beautiful insight into staying close to a loved one when communication changes. 

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