Walking On Water - a Column by Shalana Jordan

Shalana “Shay” Jordan is a single mom of two boys who’s been adjusting to her “new normal” of aHUS for over two years. She also battles with Stage 4 Kidney Disease, Lupus, May-Thurner Syndrome, and severe Anemia.

She wants to take part in helping fellow rare disease patients adjust to and prepare for the new life that’s unfolding for them. Because life does end at diagnosis.

Shay also enjoys women’s health education, fiction writing, patient advocacy, photography, cruises, and international travel. She lives in South Carolina with her two boys.

The multiple ways I’m living with chronic pain because of aHUS

Most of us go to great lengths to lessen or get rid of pain, whether we’re using over-the-counter (OTC) or prescription medications, anesthesia, nerve blocks, acupuncture, meditation, or other methods. But what do we do when that pain becomes chronic? According to a report published in April by the U.S.

A near-death experience makes holidays look a little different

Halloween is one of my favorite holidays. Every year, my family dresses up in themed costumes to go trunk-or-treating and door-to-door candy-grabbing. But in 2020, I had no idea if something as simple as trick-or-treating was ever going to happen again for my family. That year, most of the world…

How holiday garb has improved my mental health

“Mind over matter” is an expression I’ve always heard, but I never took it to heart until after my near-death experience. It’s amazing how my state of mind and the perception others have of me can affect how I feel. In September 2020, I developed atypical hemolytic uremic…

Ghosts from my past taught me about living in the present

Sept. 16 marked the three-year anniversary of my first near-death experience. In September 2020, I was hospitalized and then spent almost two months in the intensive care unit with multiple organs failing. After weeks of testing and interviews, doctors determined that I had atypical hemolytic uremic syndrome, a…