With chronic illnesses like sarcoidosis, community is key
Sitting at the infusion center for my intravenous immunoglobulin (IVIG) treatment, I opened up a Google Docs tab on my laptop. I’d just gotten an idea for a column, and wanted to jot down…
Float Like a Buttahfly
— Kerry Wong
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.”
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It’s empowering to attend a patient forum where people ‘get it’
I have a confession to make: I don’t read all my email. I try to, but it can be overwhelming. Instead, I skim through my inbox to see if I need to read anything…
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