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.
“You’ll need someone present during the entire surgery, which can last three to four hours, just in case end-of-life decisions need to be made on your behalf.” I looked up from the information packet I was skimming. The words…
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