Living With ISM: A Patient and Physician Discuss Options 04/23/2024

Before she was 35, Suki Tipp and her family lived what she would describe as a busy, but relatively normal life. But then anaphylaxis after a wasp sting caused her to be hospitalized for days. Unfortunately, this was only the beginning – she started having unpredictable and debilitating symptoms including stomach pain, bone pain, new allergic reactions to foods and anaphylaxis. She adjusted her life and her family’s life around potential disease triggers – avoiding brands of toothpaste or laundry detergent, eliminating certain foods, and postponing vacations. To make matters worse, her triggers changed frequently and randomly, so she felt like she needed to adapt her lifestyle while also avoiding the outdoors and new environments to limit potential triggers. Her doctors finally diagnosed her with a rare disease called indolent systemic mastocytosis (ISM). Systemic mastocytosis is a rare disease estimated to occur in approximately 1 in 10,000 adults, and ISM is the most common sub-type of SM. i Suki and her clinician, Dr. Pankit Vachhani, will be talked about the burden of living with ISM and appropriate treatment plans.