Walking On Water - a Column by Shalana Jordan

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…