Columns

Those of us living with a rare or chronic disease frequently talk about hospitalizations, medications, symptoms, fears, near-death experiences, and so much more. But something we don’t often talk about are finances. When the COVID-19 pandemic descended upon us, the International Labour Organization warned in April 2020 that nearly…

As my eyes slowly opened, I realized my vision was blurry. My head was throbbing, and I could taste blood. My right cheek felt itchy from the fibers pressed against it. But I could feel warm sunlight bathing my left cheek. I blinked hard to get my vision to clear…

Note: This column was updated Jan. 17, 2025, to correct that Soliris is an antibody therapy. Ding-ding, ding-ding. The ringing echoes throughout the unit, causing a brief silence. It sounds like the toll of a bell as a boat leaves the harbor. Then the unit erupts in unanimous…

It’s my favorite time of year: holiday season! That’s when we have Halloween, Thanksgiving, Christmas, New Year’s, and December birthdays for me and my kids. Having two autoimmune diseases and subsequent medical issues, however, makes it hard for me to participate in all holiday events. It’s easy to feel I’m…

Note: This column was updated Jan. 17, 2025, to correct that Soliris is an antibody therapy. I can’t think of a worse personal fear then having two autoimmune diseases during a pandemic. Every cough I hear in public sends me into a panic. I hold my breath while walking…

People die every day. Old age, illnesses, accidents — death is an inevitable part of life. So how is it that even when I was standing face to face with death, I still didn’t think for a second that I was dying? In September 2020, I almost died. I assumed…

Expensive or subpar healthcare is the norm in the United States. There’s a staggering number of inadequacies in our system. But having a rare disease can suddenly give you a golden ticket to exceptional medical care. I became ill in September 2020 and assumed I had COVID-19 for a…

Escaping death doesn’t come easily. While my severe health issues resulted in emergency medical care and a rare disease diagnosis, they also left scars — physical and emotional. I’d been unwell for much of 2020. My whole family had gotten COVID-19 in March, so when I started developing random…

“You’re dying.” That was my first introduction to atypical hemolytic uremic syndrome (aHUS). I didn’t have a diagnosis yet, but that’s how my journey began. Rewind to April 2020, when my family had COVID-19. My oldest child was very sick, but my youngest child and I had zero…

When I took this column on a year ago, I wasn’t sure I would have enough to write about each week. Once one learns to say “atypical hemolytic uremic syndrome,” how much is there to say about living with it? So before I committed to the gig, I did a…