Sometimes I forget just how rare living with aHUS is
“So is this normal for you?” My hematologist crossed one arm over his chest and supported his chin with one hand as he gave me a concerned and puzzled look. My blood pressure was…
Walking On Water — Shalana Jordan
Shalana “Shay” Jordan of Columbia, South Carolina, is a photographer, writer, retired educator, and single mom of two boys. She’s been adjusting to her “new normal” of battling atypical hemolytic uremic syndrome, stage 4 kidney disease, lupus, May-Thurner syndrome, and severe anemia. She received these diagnoses in 2020 at 36 years old. She wants to help fellow rare disease patients adjust to and prepare for the new life that’s unfolding for them. Because life doesn’t end at diagnosis.
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Getting diagnosed was only the beginning of my aHUS journey
Thrombocytopenia, liver failure and hematoma, hysterectomy, end-stage renal disease, hypertrophic cardiomyopathy, uncontrolled hypertension, chemotherapy-like side effects, muscle atrophy, post-traumatic stress disorder, chronic fatigue, edema, May-Thurner syndrome, nerve damage, and anemia. That’s a “quick” list…
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