In this episode, we explore malignant atrophic papulosis—also known as Degos disease—an extraordinarily rare microvascular disorder so uncommon that most clinicians will never see a single case. For decades, medical literature labeled it "uniformly fatal." Our guest, Dr. Lee Shapiro, encountered this reality when he began treating a rapidly deteriorating 16-year-old boy with no clear treatment path. Driven by urgency, he reached out to experts across the country, slowly piecing together clues that ultimately led to the first successful treatment of systemic Degos disease. Today, Dr. Shapiro is a leading advocate for patients, connecting a global community, promoting early recognition, and working tirelessly to expand access to life-saving therapies.
Learn more at The Degos Disease Foundation