Walking On Water – Shalana Jordan

Walking On Water — Shalana Jordan

Walking on Water BANNER

Shalana “Shay” Jordan of central Florida, is a photographer, writer, retired educator, and mom of two boys. She’s navigating life with her “new normal” of battling atypical hemolytic uremic syndrome (aHUS), stage 4 kidney disease, lupus, May-Thurner syndrome, immune thrombocytopenia (ITP), Thrombic thrombocytopenic purpura (TTP), and uncontrolled hypertension. She received her aHUS diagnosis in 2020 at 36 years old.

Being a part of the company that publishes this website, BioNews, means she can take part in helping fellow rare disease patients adjust to the new life that’s unfolding for them. Hearing someone else’s experience with the “unknown” is invaluable. Being rare can be very lonely, but BioNews advocates daily to help patients realize they’re not so alone after all. Because life doesn’t end at diagnosis.

Learning to process my feelings when medical trauma leads to survivor’s guilt

Before my medical journey began, I had heard the term survivor’s guilt before, in reference to mass shootings, natural disasters, or other tragic events. Living through something traumatic changes your outlook on life. But I never anticipated that major medical events could come with guilt as well. Three years…

As an aHUS patient, finding affordable prescription drugs is challenging

Healthcare in the United States is always a hot-button topic. The U.S. healthcare system has long been criticized as being inadequate, expensive, not inclusive, restrictive, and so many other things. I received a crash course on the subject when I almost died three years ago. Surprisingly, though, once I qualified…

What is plasmapheresis? How the once unknown word became common to me

Plasmapheresis is a word I’d never heard before October 2020. I’d heard of people donating plasma; in fact, I had a cousin who did it for money when I was growing up. But I had no idea what plasma was used for. Little did I know it’d play a…

How simple alternative medicines have helped my quality of life

Note: This column was updated Jan. 17, 2025, to correct that Soliris is an antibody therapy. This column describes the author’s own experiences with some alternative treatments. Not everyone will have the same response to them. Consult your doctor before starting or stopping a therapy. I’ve always found alternative…

Facing the challenges of travel with a chronic illness

This year, I finally did something huge on my bucket list: I went to Greece. Santorini, to be specific. The white volcanic rock, the sea cliffs overlooking the caldera, the beautiful, iconic blue steeples, and even the flying dress photo shoots — I wanted to see it all. But when…

My medical trauma unexpectedly resurfaced during a hospital visit

Note: This column was updated Jan. 17, 2025, to correct that Soliris is an antibody therapy. My heart began to race. My breathing became shallow. I felt a bead of sweat form and run down my brow. My stomach churned and a lump formed in my throat. Was I…