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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Heart complications were a puzzling part of my aHUS journey

Living with multiple rare and chronic illnesses is stressful, difficult, and complicated. I have four autoimmune disorders and one connective tissue disorder, each of which comes with its own unique set of comorbidities. But the condition that causes the most issues for me is my primary illness, atypical hemolytic…

Despite the challenges, I’m thankful aHUS granted me a new life

Living with a rare and chronic illness is undoubtedly one of the hardest things I’ve ever done. Nearly dying in the hospital and spending almost two months in the intensive care unit was just the beginning. The experience changed everything in my life — but ultimately, it’s changed my life…

How my miraculous journey with aHUS led me to find religion

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. A few years ago, I lost my home and career, my car broke down beyond repair, and I nearly died from a rare disease. I was alone in the hospital and apart from my…

Grappling with the cost of healthcare with a rare disease

Several years ago, terms like “deductible,” “in and out of network,” “PPO,” “Medicaid,” “Medicare,” “Medigap,” “SNAP,” “prescription coverage,” and “disability” were thrust upon me suddenly and without warning. I had to learn them quickly to continue receiving lifesaving care. I was sitting in a hospital…

Navigating the challenging symptoms of May-Thurner syndrome

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. Pain throbs from the tips of my toes to the top of my left thigh. It echoes the strong, solid melody of my heartbeat. The ache worsens no matter how much I rub my…