New Patient Registry for Mast Cell Disease Research

Dr. Shonna Snyder, Research Scientist with The Mast Cell Disease Society, joins Candice and Rachel to explain the new mast cell disease patient registry and why it could be a major step forward for research and care. The conversation covers what a registry is, who can join, how data privacy is protected, and how patient-reported information may help researchers uncover patterns across mast cell diseases including Mast Cell Activation Syndrome (MCAS), Hereditary Alpha Tryptasemia (HaT), and Systemic Mastocytosis. Dr. Snyder also shares her own rare disease journey and how it shapes her approach to this project.

For more information about the registry and to start your own profile visit https://tmsforacure.org/registry/

For more information about International Mastocytosis and Mast Cell Disease Awareness Day, follow along with the event at https://mastocytosis-mcas.org/about-awareness-day/

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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 while living with a complex disease. Our guests share personal stories, insights on resilience, and practical tips for managing health and fostering connection.They discuss the impact of environmental factors, medication, and emotional health on chronic conditions, offering valuable tips for those navigating similar challenges.

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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.

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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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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 joy and strength in relationships despite health struggles. This conversation explores the complexities of living with chronic illness and the emotional burdens faced by caregivers. They share personal experiences of adapting to severe flare-ups, the misconceptions surrounding chronic illness, and the accommodations they make in daily life. The discussion highlights the emotional needs of both Candice and Rachael and their caregivers, emphasizing the importance of communication and understanding in maintaining healthy relationships. They share personal stories about navigating social situations, the importance of community support, and the complexities of managing symptoms and triggers.

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 accommodations that have to be made.

In this episode we mention some fragrance free products that have worked for us. Here is a link to Rachael's affiliated Amazon list https://www.amazon.com/shop/hedonish We're working on making a new one for future episodes.