In this first part of the conversation, Sean and Kyle sit down with longtime friend and rare disease advocate Debbie Drell, whose connection to the space runs deep—both professionally and personally.

Debbie shares the story of her sister Alex, who was diagnosed with pulmonary hypertension decades ago and given just two years to live—yet is still fighting today. As both a caregiver and advocate, Debbie offers a raw look into the realities of living with (and alongside) an invisible, life-threatening condition.

The conversation dives into the often-missed challenges of invisible illness—how someone can “look fine” while their body is under constant strain, and how misunderstanding from others can add an extra layer of exhaustion. Through personal stories—including close calls, public confrontations, and meaningful moments of empathy—Debbie highlights the importance of slowing down, paying attention, and choosing compassion over assumption.

This episode sets the stage for a deeper discussion on caregiving, advocacy, and the quiet strength it takes to navigate a world that doesn’t always understand what it can’t see. Watch for episode 298 for the second part!

LINKS

• NORD
• Pulmonary Hypertension Association