Narcolepsy With Heather from Maine

Send us Fan MailLiving with Narcolepsy | Heather's Journey from Surviving to ThrivingNarcolepsy is often misunderstood. Many people associate it with suddenly falling asleep, but the reality is far more complex. Living with narcolepsy can affect work, school, relationships, and everyday life, and many people spend years searching for the right diagnosis.In this episode of Rare Connection, Joanna sits down with Heather, the Maine NORD (National Organization for Rare Disorders) Ambassador, who is also Miss Maine for America Strong 2026 and preparing to compete for the national title. Heather shares her personal journey of living with narcolepsy, becoming an advocate, and inspiring others with her message that it is possible to go from surviving to thriving.During this conversation, you'll learn:What narcolepsy is and how it affects daily lifeWhy narcolepsy is frequently misunderstood and misdiagnosedHeather's journey to diagnosisHow advocacy has shaped her lifeHer role as Maine's NORD AmbassadorHow competing as Miss Maine for America Strong has given her another platform to raise awarenessWhy hope, education, and community matter for people living with rare and chronic conditionsWhether you're living with narcolepsy, supporting someone who is, working in healthcare, or simply interested in learning more about rare diseases, this episode offers insight, encouragement, and practical awareness.About Rare ConnectionHosted by Joanna Ball, Rare Connection shares the stories of patients, caregivers, advocates, researchers, and clinicians from across the rare disease community. Through connection, education, and conversations about research and clinical trials, the podcast aims to improve awareness and help people affected by the more than 10,000 known rare diseases.Connect with Rare ConnectionSubscribe for new episodes.Follow Rare Connection on YouTube, Facebook, and your favorite podcast platform.If you have a rare disease story or work in rare disease advocacConnect with Heather: LinkedIn: Heather DiBenedetto | LinkedInInstagram @HeatherbwalkerSupport the show