In this Hero Summit mini-sode, Candice and Rachael dig into the barriers that keep people with systemic mastocytosis from confidently living with their disease — from misinformation and confusing language to complicated healthcare systems and limited physician guidance. They also explore practical solutions, including better patient education, vetted resource hubs, peer support, and technology tools that could make diagnosis and long-term care easier. The conversation highlights how patient stories and community knowledge can create real empowerment, especially for people navigating rare disease.

Follow us on the socials:

Instagram

Facebook

Patreon

If you’d like to offer one-time support to the show, you can buy us a coffee

Buy Me a Coffee

Music licensed through Soundstripe.

Code: BYWZH6YJRUOK7RIW

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.

Follow us on Socials:

Instagram

Facebook

Youtube

Patreon

Buy Us a Coffee

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.

Follow us on socials @mastcastpod on instagram and threads, and join us over on Patreon where we will eventually share BTS clips and random thoughts or interviews in the wild. You can also find us on Facebook