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Rare disease advocate waited 19 years for her diagnosis

Talk of Iowa, hosted by Charity Nebbe

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.

Guests:

  • Claire Richmond, writer and rare disease advocate
  • Mary Snyder, author of Moosefart
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Charity Nebbe is the host of IPR's Talk of Iowa
Dani Gehr is a producer for River to River and Talk of Iowa. Dani came to Iowa from her hometown in the northwest suburbs of Chicago to attend Iowa State University, where she received a bachelor’s degree in journalism, international studies and French. Before coming to IPR, Dani covered local government in Story County for the Ames Tribune and Des Moines Register.