Walking On Water — Shalana Jordan

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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.

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My hysterectomy was one of the easiest parts of my medical journey

This week marks the five-year anniversary of my hysterectomy, which I unfortunately had to have at only age 37. It was a huge, life-changing decision that would affect any plans to expand my family and could be dangerous if there were complications. This happened 10 months after I nearly died…

Dietary supplements can be dangerous for me due to kidney disease

Note: This column describes the author’s own experiences with vitamins and supplements. Not everyone will have the same response. Consult your doctor before starting or stopping a dietary supplement. The global vitamin and dietary supplement market is ever-expanding, expected to be valued at over $230 billion in 2026. People…

I’m in the midst of a fashion rebranding I didn’t know I needed

Bombshell musicians Sabrina Carpenter, Tate McRae, and Zara Larsson all have something in common. They’ve all massively rebranded, which is when a company or celebrity changes their overall aesthetic, appearance, or sometimes even their mission and purpose. These singers have all been in the…

The days surrounding my aHUS diagnosis were a lonely time for me

Life doesn’t get much lonelier than sitting alone in the intensive care unit (ICU) during the height of the COVID-19 pandemic, cut off from what was happening outside, yet the only patient on the floor who could move around. I went to the emergency room in September 2020, not feeling…

What comes next: Telling my story after an aHUS diagnosis

A perfect storm of events in September 2020 nearly led to my demise. The intensive care unit became my temporary home for almost two months as I was thrust into the world of rare disease, chronic illness, and intense medical care. Diagnosed with an ultra-rare disease called atypical hemolytic…