Claire's message on embracing her "new normal" after a devastating rare disease diagnosis resonates with any who are finding resilience during periods of intense change.
Claire is a writer, creator and rare disease advocate. At 32, she was diagnosed with a rare, painful and chronic disease called acute hepatic porphyria (AHP), after a 19-year search for answers. As severe, unexplained pain became a focal point of daily life, she exiled her body to protect her mind. Her writing and speaking reflect how she navigates daily life with AHP, rebuilding the bridge between her physical and mental being.
Claire hopes speaking her truth builds connections and generates hope. She writes a patient column for PorphyriaNews.com, co-founded This Porphyria Life and serves on the Young Advisory Council of Unity Point, where she represents young professionals with chronic health challenges. She has a Master’s in Public Health and training in graphic design and health communication. She lives in Des Moines with her family.