Walking On Water - a Column by Shalana Jordan

Shalana “Shay" Jordan is a single mom of two boys who's been adjusting to her “new normal" of aHUS for over two years. She also battles with Stage 4 Kidney Disease, Lupus, May-Thurner Syndrome, and severe Anemia. She wants to take part in helping fellow rare disease patients adjust to and prepare for the new life that’s unfolding for them. Because life does end at diagnosis. Shay also enjoys women’s health education, fiction writing, patient advocacy, photography, cruises, and international travel. She lives in South Carolina with her two boys.

The infamous question that always irks me

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. “How are you feeling?” Just hearing that question releases a hot flash up my neck. My stomach drops, and before I know it, my eyes are rolling. That’s because I know I’ll respond with…

Grappling with the cost of healthcare with a rare disease

Several years ago, terms like “deductible,” “in and out of network,” “PPO,” “Medicaid,” “Medicare,” “Medigap,” “SNAP,” “prescription coverage,” and “disability” were thrust upon me suddenly and without warning. I had to learn them quickly to continue receiving lifesaving care. I was sitting in a hospital…