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").

Chapters

00:00 Introduction to Chronic Truth Podcast

02:32 Melissa Winger's Journey and Advocacy

05:34 The Flaws in the Healthcare System

10:51 Advocating for Patients: A Caregiver's Perspective

16:15 Maintaining Sanity in Crisis

19:24 Urgent Changes Needed in Healthcare

22:51 Community Advocacy and Engagement

Follow Melissa’s Journey:

📖 Book: Who Cares? (WhoCaresBooks.com)

🎧 New Audiobook: Just released on Audible

📋 Advocacy Toolkit: Minnesota Disability Advocacy Groups

Subscribe to The Chronic Truth Podcast for more raw conversations about thriving beyond chronic illness.

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This episode is brought to you by:

The Chronic Truth Podcast, LLC

Host/Executive Producer: Kimberly Nash

Co-Producer / Editor: Jay Wilson - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠The Podcast Mechanic⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠