With aHUS, the regulation of my body temperature is an uphill battle
A shiver went down my spine. I crossed my arms and clenched my fist to try to warm up. My teeth began chattering, and my muscles and limbs began to curl. I felt that…
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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A big move jettisoned my self-care and other healthy habits
The winds picked up, blowing ominous clouds into view. The blocked sun and cool winds made the temperature drop more than 10 degrees. We were hours behind schedule. I’d wanted to be on the…
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