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.

With aHUS, the regulation of my body temperature is an uphill battle

A shiver went down my spine. I crossed my arms and clenched my fist to try to warm up. My teeth began chattering, and my muscles and limbs began to curl. I felt that my body was shutting down. I was freezing. My rare disease, atypical hemolytic uremic syndrome…

All the ‘unexpected doors’ that aHUS has opened for me

I never thought there would be a day when I could sit back and reflect on the things that nearly dying has given me. But after years of struggling through an illness that used to be a death sentence, I can finally say I’m living again.

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…

Being diagnosed after the advent of what I consider a miracle drug saved my life

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. I never imagined that I’d be able to say I might be taking antibody therapy the rest of my life. But I also never thought I’d be on the brink of death in an…

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…

How medical PTSD affects me daily, years after my aHUS diagnosis

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. I stir from my sleep because something doesn’t feel right. I shiver as the fan’s breeze brushes over me. I’m both cool and wet. I try to lift my arm, but it barely rises…