‘My Son Is the Only Person Alive With This Condition’ | Melissa Winger

Kimberly Nash sits down with Melissa Winger, author, speaker, and relentless advocate for her son, who is the only known person with a rare chromosomal disorder (missing half of chromosome 4 + trisomy 6).Melissa Winger’s son has a chromosomal disorder so rare it has no name. After:​🔴 42 misdiagnoses ("Rare means no one believes you").​🟢 Losing her heartbeat at 21 from caregiver stress.​🟣 Battling EMRs that "protect patients in theory only".She wrote the playbook, "Who Cares?", to help families:Script tough convos with doctors ("Are you comfortable with this?").Spot "compassion fatigue" in providers (and when to walk away).Survive the adult-care cliff ("Pediatric miracles become adult orphans").Chapters00:00 Introduction to Chronic Truth Podcast02:32 Melissa Winger's Journey and Advocacy05:34 The Flaws in the Healthcare System10:51 Advocating for Patients: A Caregiver's Perspective16:15 Maintaining Sanity in Crisis19:24 Urgent Changes Needed in Healthcare22:51 Community Advocacy and EngagementFollow Melissa’s Journey:📖 Book: Who Cares? (WhoCaresBooks.com)🎧 New Audiobook: Just released on Audible📋 Advocacy Toolkit: Minnesota Disability Advocacy GroupsSubscribe to The Chronic Truth Podcast for more raw conversations about thriving beyond chronic illness.🔗 ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Linktree⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠This episode is brought to you by:The Chronic Truth Podcast, LLCHost/Executive Producer: Kimberly NashCo-Producer / Editor: Jay Wilson - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠The Podcast Mechanic⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠