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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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Erin Paterson
Erin Paterson is an internationally recognized rare disease advocate, bestselling author, and public speaker. As both a caregiver and a patient navigating chronic illness, she brings a rare combination of personal insight and professional experience to her work.
Erin has appeared on over 30 podcast episodes, is a five-time published author, and has written more than 50 articles featured across various platforms. Her mission is to demonstrate that even in the face of adversity, it’s possible to live a life filled with purpose, advocacy, and connection.
She is the founder of Lemonade Press, a publishing company that amplifies voices from underrepresented medical communities through collaborative anthologies. Erin is known for creating safe, empathetic spaces where individuals feel empowered to express their pain points, which she then helps transform into powerful, purpose-driven stories.
Through her writing, speaking, and coaching, Erin bridges the gap between patients and the corporate world, providing meaningful insight into the lived experiences of those affected by rare diseases, infertility, and mental health challenges.
She also serves as a member of the Huntington’s Disease Community Advisory Board (HD CAB), contributing her lived experience to improve patient-centered research and advocacy worldwide.
- Instagram
- @erinpaterson_allgoodthings
- @lemonadepressbooks
- Link to my company Lemonade Press: https://lemonadecommunity.com/
- Link to my author/speaker site: https://www.erinpaterson.com/
- All Good Things
- Huntington’s Disease Heroes
- Positively Rare
- Bloopy the Alien Learns about Huntington’s Disease
Medical Disclaimer:
The content shared on Amplify is for informational and educational purposes only.
Nothing discussed on this podcast—including stories, experiences, perspectives, or commentary from hosts, guests, or contributors—should be interpreted as medical advice, diagnosis, or treatment recommendations.
Always seek the guidance of your physician or other licensed provider with any questions regarding your health, medical conditions, or treatment options.