Ep. 176: SM Perspectives - The Doctor's Experience of Treating Systemic Mastocytosis
Part of the series: Allergy, Asthma & Immunology Innovations Podcast
This podcast was made in partnership with Allergy & Asthma Network.
We thank Blueprint Medicines for sponsoring this episode. While they support the show, all opinions are our own, and sponsorship doesn’t influence our content or editorial decisions. Any mention of brands is for informational purposes and not an endorsement.
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 our 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.
About our guest
Dr. Alexander Kim is an associate professor of medicine at UC San Diego, where he co-directs the Mast Cell Disorders Program and directs the Allergy and Immunology Fellowship training program. His early clinical focus was drug allergy and desensitization, which led him toward systemic mastocytosis after noticing a pattern of patients with recurrent, multi-trigger anaphylactic reactions. He is actively involved in mast cell disease patient advocacy work.
More resources about mast cell diseases
Timestamps
Our episode about the doctor’s experience treating mast cell disease
