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Rare disease advocate waited 19 years for her diagnosis

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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
Charity Nebbe is IPR's<i> Talk of Iowa</i> host. She also hosts IPR's podcasts <i>Garden Variety</i> and <i>Unsettled</i>. Since 2010, Nebbe has interviewed, conversed with, and shared ideas from guests of all backgrounds and locations, and has helped listeners better understand, appreciate, and explore their state and the world around them. Nebbe has a bachelors degree from Iowa State University.
Dani Gehr is a talk show producer for Iowa Public Radio. She holds a bachelor's degree from Iowa State University. Since 2022, Gehr has worked with IPR's talk team to bring news and features to IPR's listening audience.