Last night was the opening session of The Mast Cell Society 's Mast Cell Disease TeleECHO. I'm thrilled to have been invited to be part of this cohort and will continue to add notes to this blog article.
Topic: Advanced Systemic Mastocytosis Variants, 9/4/2025.
Speaker: Celelettin Ustun, MD, Rush University
- Early in my diagnoses journey, my doctor had predicted that I might have mastocytosis. At that point, I became very aware of the details about it, because that diagnosis remained on the books until I was accepted into the NIH and received my final diagnosis, 7 or 8 months later.
- Since it is now 9 years since that early research, it is exciting that several additional resources have become available...some approved by the FDA, and some of them whose approvals are in progress. Having reviewed the life expectancy with those neoplastic diagnoses, I feel very blessed that Hereditary Alpha Tryptasemia has a life expectancy that is fairly close to normal.