Claire's message on embracing her "new normal" after a life-changing rare disease diagnosis resonates with any who seek 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 has a Master’s in Public Health and training in graphic design and health communication. She serves on the American Porphyria Foundation's Member Advisory Board and participates in Global Genes' Rare Compassion Project. She lives in Des Moines with her family and various houseplants.
Claire hopes speaking her truth builds connections and generates hope. She writes about finding joy despite living with a complex medical condition and chronic pain in "One Thousand Flaming Swords," a patient column for PorphyriaNews.com. She also has a newsletter called "Claire's Invisible Life."
Claire's message resonates with anyone living in deep uncertainty, and navigating the medical system with a rare disorder. She's presented at various events, including the BioNews Rare Disease Day 2022 virtual panel and the National Organization for Rare Disorders' Living Rare Living Stronger 2021 virtual conference.