As rare disease statistics go, my case of aHUS is unusually rare
Rare diseases are, by definition, uncommon, but I’ve been surprised by how many people are affected by them. About 1 in 10 people in the United States has a rare disease, or around…
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.
Featured Post
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…
Read more