Mast Cast: An SM Podcast

In this episode, patient and advocate Rachell Largent-Phillips shares her journey with systemic mastocytosis, from diagnosis to advanced disease, and how advocacy has transformed her life. We explore the challenges of living with a rare disease, navigating the healthcare system, and the power of patient voices in driving change. We also get into some of the finer points of dating and intimacy whil...

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 too...

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 "...

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. Fo...

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 f...

In part two of talking with their caregivers, Candice and Rachael and their partners discuss the complexities of navigating relationships while living with chronic illnesses, particularly systemic mastocytosis. They share personal experiences, the importance of communication, and the role of caregivers in providing support. The conversation highlights the challenges faced and the ways they find jo...

In this episode, Candice and Rachael invite their partners/caregivers to discuss the hurdles, pitfalls, stressors, and joys of being a partner and caregiver to a chronically ill person living with Systemic Mastocytosis. You'll hear what it has been like for our partners to be on the diagnostic journey with us, and what it's like to start dating someone knowing they have a mast cell disease and the...

In this episode, Candice and Rachael further discuss their experiences living with SM, their coping mechanisms, things they've learned along the way, and share how they approach advocacy for themselves and others. If you have any questions or suggestions for the hosts, email us at podhost@mastcastpod.com . Please follow us on Instagram @mastcastpod.

In this episode, Candice and Rachael share a little about themselves, how they met, how the podcast came to be, their individual paths to diagnosis, their current symptoms, and call for your questions for them to answer in part 2!

In our very first episode, we talk to Jessica Fraser, executive director of The Mast Cell Disease Society (TMS). She shares with us her very personal connection to systemic mastocytosis and, gets deep into the many resources TMS provides for patients, caregivers and providers. We discuss the mission of TMS, the upcoming conference, support groups, advocacy, support for newly diagnosed patients, CM...