In this episode our guest, Shawna Hull, shares how her "invisible" disease turned her life upside down and sparked a relentless advocacy journey. Listen to how she moved through frustration into impact, inspiring others and pushing for real change in the medical system.

Shawna takes us through a decade-long saga of misdiagnosis and hospitalizations, and she shares the tools she created (like her "SM binder") that empowered her to advocate for herself. We discuss the confusing overlap of symptoms with other conditions, navigating complex medical systems, and the profound mental health toll of living with an invisible illness. Shawna shares her insights on managing triggers like fragrances, heat, and food sensitivities, and how she embraces new hobbies and routines to still find joy amid the chaos. Shawna's story shows the importance of advocacy, community, and the power of being proactive.

For anyone affected by SM, other mast cell diseases, or chronic illness in general, this episode offers hope, practical strategies, and a call to advocate for yourself in a healthcare system that often overlooks invisible struggles. Shawna's resilience and leadership exemplify how even the smallest actions (like her meticulous binder or careful daily planning) can create lasting change. Tune in for honest conversations, insights, and the inspiration to advocate loudly, even when no one’s listening.

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In this episode of Mast Cast: An SM Podcast, Rachael and Candice introduce the listeners to the annual HERO Summit. The summit is hosted by Blueprint Medicines and includes researchers, specialists, advocates, and patients who come together for a day of workshops and problem solving. This is the first of several shorter episodes focused on the summit that will roll out between regular episodes.

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In this Episode Candice and Rachael talk with Dr. Hussein Abbas, a research physician at MD Anderson Cancer Center in Houston, TX. Dr. Abbas is fairly new to systemic mastocytosis, but has been specializing in treating SM for the past few years. Dr. Abbas talks about what brought him to SM as a specialty, what he has learned, what research he is particularly interested in, and sets the stage for further conversations on specific topics for future podcasts. On the back half of the episode, listen to your hosts talk about their takeaways from the conversations, the new questions the talk brought up, and hear their excitement about having such a great opportunity to discuss these issues with a specialist.

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