Rare disease advocate waited 19 years for her diagnosis
Claire Richmond lives with acute hepatic porphyria, a rare disease most doctors will likely never see. It took 19 years for her to be diagnosed.
She would have been turned away once again if it hadn't been for a resident who had recently taken a test that included a question on porphyria — a favorite among test writers to trip up medical students.
In the years since her diagnosis, Richmond has become a rare disease advocate and joins Talk of Iowa host Charity Nebbe to talk about her story and her new perspective on life.
Later, Mary Snyder is the author of Moosefart: A man, a woman and a shattered dream. As her former fiance and long-time friend neared the end of his life — the result of a late-stage diagnosis of prostate cancer — he asked her to share his story in hopes others would learn from the mistakes that led to his death.
- Claire Richmond, writer and rare disease advocate
- Mary Snyder, author of Moosefart