I remember aHUS, 6 weeks in the ICU, and 17 new medications
There I was five years ago, sitting in my car much longer than I should have. Just the thought of walking to the pharmacy was daunting, nearly panic-inducing. The longer I stared at the…
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.
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Despite the side effects, Soliris has given me another chance at life
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. I’ve endured five years…
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