From Physician to Patient to Pioneer: Dr. Shazhan Amed on Surviving TEN and Building Haibu Health

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 

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