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Facing Discrimination With an Invisible Illness

I was already emotional before I checked in at the nurse’s station. More than a week into a severe acute porphyria attack, I needed urgent hospital intervention. My body was weak and my mind was disoriented. Luckily, the direct admission orders from my hematologist allowed me to bypass the…

How I Vacation With Acute Hepatic Porphyria

I refreshed the Lyft app on my phone as the speakers behind me blared music from the beloved animated classics of my childhood. I eased my body onto a relatively dry strip of concrete and continued my day of waiting. That morning in February 2020 started earlier than my body…

Why I Won’t Quit Wearing a Mask

Waiting in the center aisle of the plane wearing a brown backpack and a blue surgical mask, I felt the eyes of strangers on me. It was February 2020, and my family was boarding an early morning flight to Orlando, on our way to Disney World for a little winter…