Erythropoietic protoporphyria (EPP) is a rare disease causing absolute intolerance of skin to light. In about 5% of EPP cases, patients also experience liver failure, requiring a life saving liver transplant.
Florence, an immunology PhD, career scientist and EPP patient, underwent a liver transplant in 1989 following a liver failure due to her EPP. In early 2012 Florence shared her story on camera, discussing her transplantation in depth. Clinuvel is very grateful to Florence for being able to share this online.