#176: SM Perspectives - The Doctor's Experience of Treating Systemic Mastocytosis

We hear a lot about the struggles patients face on their systemic mastocytosis journey, the years of normal labs, the feeling of not being believed. But have you ever wondered what that feels like from the doctor's side?

Kortney and Dr. Payel Gupta are joined by Dr. Alexander Kim, an allergist and immunologist who co-directs the Mast Cell Disorders Program at UC San Diego, for an honest look at what it's like to sit on the other side of the exam table and untangle a diagnosis of this complex condition.

What we cover in this episode about treating systemic mastocytosis

• Why "your labs look fine" doesn't mean nothing's wrong. Dr. Kim explains why this journey can be challenging for doctors when labs are normal, but symptoms are severe.
• Why systemic mastocytosis is still hard to diagnose, even with better tools. SM has a clearer testing path than mast cell activation syndrome (MCAS) does, but the overlap between the two still creates real diagnostic uncertainty in practice.
• What “dismissiveness” looks like from a doctor's side. From time constraints and busy schedules to the gap between meaning to listen and actually making a patient feel heard.
• Practical fixes for short appointments. Asking for a double appointment slot, bringing a written summary instead of hundreds of pages of records, and scheduling shorter, more frequent follow-ups instead of one long visit.
• What each side wants the other to understand. What it takes to build a trusting, lasting relationship with a healthcare provider when you're living with systemic mastocytosis.

More resources about mast cell disease

• About the PIONEER Trial for Avapritinib
• Mast Cell Disease Toolkit
• What is Mastocytosis?
• What is Mast Cell Activation Syndrome (MCAS)?

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Made in partnership with The Allergy & Asthma Network.

Thanks to Blueprint Medicines for sponsoring today’s episode.

This podcast is for informational purposes only and does not substitute for professional medical advice. Always consult with your healthcare provider for any medical concerns.