A Rare Day

The Pink Zebra
It was that gnawing feeling, that I was forgetting something… something about Leap Day…an unusual day…a rare day. Then is struck me: Rare Disease Day. It’s on the last day of February every year, and it was four years ago today that I rested in the knowledge I had a diagnosis.  For years, I’d been on a quest for the name of the of what was ailing me and on February 29, 2012 I thought I had the answer — Carcinoid Syndrome– a rare disease with a support ribbon that is zebra-striped. I was even going to bring a zebra-striped cake to work to ‘celebrate’, but I was too exhausted, and I’d only known for a week and didn’t have time to plan.  Several months later I was part of a clinical trial–the first in the Midwest–that would show where the carcinoid tumors were, but not in me, I didn’t have any.  

The diagnoses quest continued for three years, with innumerable possibilities excluded. Then, not quite a year ago there was an answer…FINALLY…after 20 years. Although I didn’t get a specific name (“You’re stomach doesn’t expand like it should–it’s paralyzed), gastroparesis is also a rare disease, but the support ribbon is just green, no flashy pink zebra.  

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