From infancy, Mahsa’s life was defined by chronic infections, fatigue, and pain, yet her bloodwork always appeared normal. For over three decades, her symptoms were dismissed as stress or allergies, even as she suffered undiagnosed gastrointestinal organ damage and multiple surgeries. It wasn’t until age 32 that Mahsa took her survival into her own hands. By researching her own symptoms and directly requesting her own biopsies, she finally forced a breakthrough: a diagnosis of Mikulicz Disease and systemic IgG4-Related Disease (IgG4-RD).
Receiving the pathology report was a moment of empowerment, but the victory was short-lived. Because Mahsa is “seronegative”—meaning her bloodwork still doesn’t reflect the active disease confirmed by her tissue biopsies—she continues to face disbelief from high-end research hospitals and constant denials from insurance. She has faced grueling “step therapy” requirements and a recurring need to provide “proof” of her illness just to keep her personalized treatment plan active. Compounding these hurdles is the isolation of being a young woman in a disease community predominantly made up of older men, and a six-hour round-trip drive for every specialist and infusion appointment.
Today, Mahsa is turning her near-death experiences into a lifeline for others. She co-founded the non-profit IgG4-RD Life to bridge the gap in affordable, specialized care and to educate both patients and policymakers. Through her work with the Infusion Access Foundation, she is fighting to ensure that no other patient’s life is left at the mercy of paperwork or cost-cutting incentives. For Mahsa, her illness has been transformed from a source of despair into a lifelong mission to ensure that rare disease patients are treated with the respect, promptness, and equity they deserve.