A Report from AAAAI 2025

By Shonna Snyder, Ph.D., TMS Sr. Research Scientist

Attending the American Academy of Allergy, Asthma, and Immunology (AAAAI) Annual Meeting is always a highlight of the year, and this year in San Diego was no exception. I had the honor of representing TMS with two research posters—and the response was incredible. We had a steady stream of attendees, including researchers, physicians, nurses, fellows, and representatives from pharmaceutical companies, all stopping by to learn more.

Our two posters, “Symptoms, Triggers, and Quality of Life Reported by Patients with Mast Cell Diseases” and “Learning about the Diagnostic Journey of Mast Cell Diseases Through a Needs Assessment,” sparked meaningful conversations and shined a light on the real-life experiences of those living with mast cell diseases (MCDs).

One of the key takeaways from this research is the importance of being diagnosed using the proper MCD guidelines. The data revealed that some patients are still being diagnosed with mast cell activation syndrome (MCAS) using alternative criteria not endorsed by the American Initiative in Mast Cell Diseases (AIM). For instance, 9.36% of respondents reported diagnosis through heparin and/or chromogranin A testing, while 26.78% were unsure what testing was done at all.

This highlights just how critical it is for patients to track their testing and diagnosis journey. Keeping a journal or record of the tests you’ve had and your results can empower you in conversations with specialists and help ensure that your care team is following current guidelines.

The path to diagnosis can be long and challenging. Many respondents said they were misdiagnosed, saw physicians unfamiliar with MCDs, or struggled to find doctors who could recognize and diagnose these conditions. In fact, a significant portion of survey participants shared that it took over 10 years from their first symptoms to receive an accurate diagnosis.

We also explored the most commonly reported triggers and symptoms. Heat, stress, and certain foods or beverages topped the list of symptom triggers. As for symptoms themselves, fatigue, sleep disturbances, pain, brain fog, and flushing were the most frequently cited as difficult to manage. Respondents with MCAS tended to report more severe symptoms, more triggers, and a greater need for support in their daily routines compared to those with mastocytosis.

One particularly eye-opening finding: 75.74% of respondents do not have a signed emergency room protocol for anaphylaxis or MCD, and more than half (52.45%) didn’t know that TMS recommends carrying this documentation at all times. If that’s news to you too, we encourage you to visit our Emergency Room Response Plan for more information and resources.

It was a privilege to present these findings and connect with so many dedicated professionals at AAAAI this year. I’m excited to keep bringing the MCD community new research insights and continuing to advocate for better care and awareness. This year’s conference was truly exceptional.