In this powerful episode marking Rare Disease Awareness Day, we bring together two remarkable guests whose lives have been profoundly shaped by rare diseases. Erin Paterson, who carries the gene for Huntington's disease and cares for her father with the same condition, and Laura Will, mother to five-year-old Alden who has polymicrogyria, share their unique yet interconnected journeys.

The conversation explores the complex reality of being both a caregiver and advocate while maintaining one's own identity. From Laura's innovative concept of "soul to soul communication" with Alden to Erin's approach to involving her daughter in her father's care, these stories highlight how rare diseases, though individually uncommon, create universal experiences of love, resilience, and finding joy in unexpected moments.

Erin discusses her journey from hiding her diagnosis to becoming an advocate and voice for the rare disease community. Laura, a former palliative care nurse turned "Dragon Mom," shares insights on finding strength in uncertainty and creating support systems for other parents navigating similar challenges.

Key Takeaways:

• Connection doesn't require identical diagnoses - finding others facing similar challenges is what matters most
• Life with rare disease can be both challenging and beautiful simultaneously
• Small achievements others take for granted can become meaningful victories worth celebrating
• Pain can be transformed into purpose through advocacy and support for others
• Setting boundaries around caregiving is essential for sustainability
• Managing uncertainty becomes easier with practice and specific strategies
• Sharing your story, whether through casual conversation or published work, helps build understanding about rare disease

To learn more about rare disease awareness and support, check out the anthology Positively Rare, which benefits Global Genes, and Jessica Fein's memoir Breathtaking: A Memoir of Family, Dreams, and Broken Genes.

Learn more about Erin:

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Order Jessica's memoir, Breath Taking: A Memoir of Family, Dreams, and Broken Genes

Music credit: Limitless by Bells