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.

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…

Can relationships survive rare diseases and health complications?

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. Relationships are hard. Couples may face many challenges, such as family drama, scheduling and time management issues, the blending of two families, and disagreements. But what happens when a rare disease, medical complications,…

When living with aHUS, being prepared for complications is challenging

When I nearly died a few years ago from a rare disease I’d never heard of, I was understandably overwhelmed. And it wasn’t only because of thoughts about my own mortality, but also all of the comorbidities that came along with the disease. I hadn’t expected that I might…

Weight fluctuations can be a challenging part of life with aHUS

Weight is a popular topic here in the U.S., and “skinny” seems to be the desired standard. Celebrities, regular working people, and even teens and children are constantly pressured to be thin. But what happens when you have a rare, chronic disease that wreaks havoc on your body? I spent…