Everybody has mast cells in their body, as they play a critical role in allergic response. Mast cells release mediators to attack allergens, but can sometimes overreact when no allergen is present. This is the case for Pauline, who was recently diagnosed with mast cell activation syndrome (MCAS). Though her diagnosis is fresh, she has been unknowingly battling this disease for over 15 years. Ever since becoming pregnant her mast cells have been activating at the slightest provocation, including environmental factors, diet or even intense emotions. During a minor flare she will experience sinus blockage, puffy eyes, skin flushing and painful welts, while a major flare can lead to anaphylaxis. Finally finding a diagnosis has allowed Pauline to look back over the past 15 years with a fresh understanding, while providing new ways to assert some control over her unpredictable disease.

In this episode of the Major Pain podcast, Pauline shares information about how she manages MCAS, while reflecting on her diagnosis and the tumultuous road that led to it. 15 years of doctors telling her she was imagining things led her to question reality, and laid the groundwork for medical PTSD. She felt brainwashed into thinking she had an OCD skin picking condition, when in fact MCAS was causing painful welts. These welts became so severe that strangers on a New York subway platform thought Pauline had been beaten, assuming she was fleeing domestic abuse with her daughter. She wrote about that experience in an article published in the Washington Post, which you can read here. Pauline’s dietary sensitivities have created challenges in finding appropriate treatment for her condition. For example, she can only take benadryl created by a compounding pharmacy, as the gelatin in gel caps from the store bought version makes her throw up. Pauline believes MCAS is vastly underdiagnosed, as the testing is unreliable and awareness of this disease is limited. By sharing her story, Pauline hopes to aid others on their path towards solving their own mast cell mysteries.

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