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Kerry Wong lives in Westchester, NY, with her husband, the boy next door she had a crush on since she was a child. She was diagnosed with sarcoidosis in 2015, after an 8-year search for answers. Though disabled, Kerry remains active as a writer and advocate for the rare disease and chronic illness communities. Her goal is to help others living with these conditions feel seen, validated, and empowered. She recently published Kaleidoscope: Rare Disease Stories, a diverse collection of true stories told by nearly 50 rare disease warriors, and plans to expand this into a series. Through her column, Kerry shares how chronic illness has led to transformation, and invites readers to float with her, “like a Buttahfly.”
One of the most stressful aspects of rare disease life is visiting a new doctor. You’d think we’d be used to it — after all, we do it often enough. But between the sheer volume of information we…
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