Emerging from a Life in the Shadows

Erythropoietic protoporphyria (EPP) is a rare, inherited metabolic disorder that triggers a toxic photochemical reaction in skin when exposed to light. A short time in the sun for someone with the condition can result in excruciating, second-degree–like burns and leaves patients sidelined from normal outdoor activity. Craig Leppert, who has EPP, saw his childhood shaped by constant vigilance against sunlight, years-long diagnostic delay, and the social isolation of a condition few clinicians recognize. Leppert, founder of the non-profit Shadow Jumpers, discusses his experience with EPP, the benefits he’s had as a participant in a clinical trial of an experimental therapy to treat the condition, and the potential for transforming what’s possible for people living with the disorder.