Episode Summary 

What happens when a physician becomes the patient—and then an entrepreneur? Pediatric endocrinologist Dr. Shazhan Amed shares her harrowing, transformational journey through toxic epidermal necrolysis (TEN), a rare, life-threatening reaction often triggered by medications. Shazhan opens up about pain, fear, advocacy, and the moments of kindness that sustained her. She then connects those lessons to why she founded Haibu Health: to pair empathy with data and improve how teams communicate, coordinate, and care—especially in pediatric diabetes. 

Why You Should Listen 

• Rare, lifesaving insight: Understand toxic epidermal necrolysis from the inside—how it presents, why minutes matter, and what compassionate care looks like in crisis. 
• Practical advocacy tips: Concrete ways families can protect sleep, manage pain, and coordinate care—the small changes that change outcomes. 
• Clinician perspective, transformed: Hear how becoming a patient reshaped a physician’s views on communication, documentation, and empathy. 
• Innovation with heart: See how Haibu Health blends data + humanity to improve team-based care in pediatric diabetes (and beyond). 
• Leader playbook: Mentorship, defining purpose, and making uncomfortable leaps—how to build mission-driven work that lasts. 
• Caregiver validation: If you’ve stood bedside, you’ll feel seen—and leave with language and ideas to be heard in the system. 
• Actionable takeaways: Simple practices any clinic can adopt tomorrow: batch vitals, explain the plan, involve caregivers, and treat kindness as care. 

Timestamps 

• 00:00 – Welcome & setup: why this story matters 
• 01:16 – Who is Dr. Shazhan Amed: clinician, researcher, founder 
• 02:50 – What is toxic epidermal necrolysis (TEN) and how it presents (connection to SJS/TEN spectrum) 
• 06:39 – Mentors who changed everything—from lab to fellowship to leadership 
• 10:06 – Pediatrics is relational: caring for the child and the family 
• 13:11 – The day life flipped: fever, blisters, rapid decline 
• 15:39 – ICU & burn unit: pain, vision loss, and the sound of urgency 
• 18:58 – Advocacy in action: batching vitals, protecting sleep, controlling pain 
• 21:00 – Music therapy & humanity at the bedside 
• 23:56 – Caregiver trauma and the physician who empowered her husband 
• 29:14 – Coming home: support networks and the non-linear path to discharge 
• 30:01 – Lessons for clinicians: time is gold; communicate with empathy 
• 31:36 – From insight to impact: the origin of Haibu Health 
• 36:28 – Leading with purpose: defining a personal “why” 
• 39:00 – Joy & recovery: sabbatical, family time, tennis, and a travel gem (Matera, Italy) 
• 41:26 – Closing, calls to action, and where to connect 

Want to Share Your Voice? 

If you’re a patient or caregiver, you can join Patient Voice Connect to share your experiences and help shape healthcare here. 
 

Join our email list to get new episode updates here. 
 

Together, we can bring more voices to the table and shape the future of healthcare. 

Share this episode, leave a review, and follow