Australian Woman Shares Ongoing Battle with Rare Auto-Inflammatory Disorder

Sydney, Australia – Ebonie Boucher, an Australian woman, has shared her ongoing battle with a rare systemic auto-inflammatory disorder, shedding light on the complexities and challenges faced by individuals with chronic and undiagnosed conditions. Boucher's journey began several years ago when she experienced a seizure in her sleep, an event she states "since that day my life has never been the same." In 2021, Boucher reported losing peripheral vision in her right eye, leading to diagnoses of optic neuritis and autoimmune pancreatitis. Her condition necessitated an extended hospital stay, including time in an induced coma within the Intensive Care Unit. Since then, her optic neuritis has recurred, affecting her left eye, and she has faced a litany of severe health issues, including pulmonary embolism, aspirational pneumonia, deep vein thromboses (DVTs), multiple bouts of pancreatitis, appendicitis, acalculous cholecystitis, and severely abnormal liver function tests. Boucher's medical team ultimately diagnosed her with a systemic auto-inflammatory disorder, an umbrella term for her condition which she notes "doesn't quite have a specific name" but behaves aggressively, similar to vasculitis. Despite treatments involving high-dose intravenous steroids and potent immunosuppressants, her body continues to struggle. Looking ahead, Boucher is preparing for the next phase of her treatment. Reflecting on her experience, she shared, "It has, and will always continue to be a journey with chronic illness. The road is windy, bumpy & far from smooth sailing but you choose how you look out the window and what view you take in." She maintains a positive outlook, stating, "I choose to look out breathe in the fresh air, admire every sunrise & sunset and take in every single beautiful moment the world gives me!" Boucher concluded with a message of hope, "This journey is hard enough, so I promise you it is so much easier to tackle as many moments as you can with a smile."

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