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.
I was exhausted but couldn’t sleep. My insides felt as if an angry lava monster had its hot hands gripping and squeezing all within my torso. I was in so much pain that I was shivering. But my nurse…
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