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…
Walking On Water
— Shalana Jordan
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.
Featured Post
This month marks the six-year anniversary of my life completely changing due to an ultra-rare disease called atypical hemolytic uremic syndrome (aHUS). Six years ago, I was blissfully ignorant about just how severe chronic illness can be — the struggles, the unknowns, the inconveniences, the setbacks, and even the…
