#65 Invisible Swells: Surviving with Hereditary Angioedema Type III

In this episode of It Happened To Me, we sit down with the multi-talented Sally Pirie, a comic artist, painter, professor, toymaker, and rare disease advocate, to explore her journey living with Hereditary Angioedema Type III (HAE-3). Sally’s path to diagnosis was long, painful, and emotionally fraught, culminating in a deeply moving feature in The New York Times that helped shine a national spotlight on HAE and the broader diagnostic odyssey that so many rare disease patients face.

 

Sally opens up about the unpredictable flares of HAE, the mental toll of being misunderstood by the medical system, and how she channels her experiences into art, humor, and education. 

 

She is also Professor of Child and Family Studies and Director and Master Artist at the Comics-Based Research Lab at the University of Massachusetts, Amherst. An award-winning newspaper cartoonist and an anthropologist of childhood and infancy, she received her PhD from the University of Colorado, Boulder and is a graduate of Punahou School and Grinnell College. Her areas of expertise include comics-based research methods, ethnographic research and transgender childhoods. She was the 2020 Distinguished Visiting Professor of Liberal Arts at the University of Minnesota, Morris and the 2021 recipient of the Grinnell College Alumni Award in recognition of her lifetime of public service. She once went to New Year’s Eve fireworks dressed as a huge blue pufferfish because why not. Life should be suffused with art and joy. 

 

Topics We Cover:

• What is Hereditary Angioedema Type III, and how is it different from other forms?
• Sally’s early symptoms, misdiagnoses, and emotional health during the diagnostic odyssey
• Her daughter’s experience with HAE while taking gender-affirming estrogen and being the only documented transgender person with the condition 
• The significance of her New York Times feature 
• What it feels like to experience an HAE attack and how deadly it can be
• Navigating academia and advocacy while managing a chronic illness
• How comics and illustration became a therapeutic and educational tool
• Invisible illness misconceptions and systemic barriers in rare disease care
• The importance of laughter, joy, and resilience in the face of adversity
• Advice for undiagnosed patients and caregivers supporting loved ones with rare conditions

You can learn more about Sally on her website. She also highly recommends the Hereditary Angioedema Association for resources. And be sure to read her feature in the New York Times here. 

 

Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 

 

“It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.

 

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