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.

How I experience Soliris side effects after infusions

Note: This column describes the author’s own experiences with Soliris (eculizumab). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. My nerves began to feel like they were on fire. Stinging and tingling were working their way down from…

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

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. 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…

A near-death experience makes holidays look a little different

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. 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…

How holiday garb has improved my mental health

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. “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…