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.

Establishing a new medical team after moving to a different state

Moving is simultaneously one of the most dreaded and exciting events in life. There’s the thrill of new beginnings, but trials and tribulations can also occur, especially during a long-distance move. Having just settled in a new state, I’m now in the thick of the next complication: finding a new…

With aHUS, low platelet levels are my body’s alarm system

“We don’t believe that lupus is causing your medical emergency because you’re experiencing thrombocytopenia as well.” I blinked weakly at the doctor in front of me, puzzled by the news. I’d been admitted to the intensive care unit (ICU) just hours earlier and told I was dying of kidney failure.

A delayed insurance authorization adds stress for ill patients

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. The hand on the clock ticked to the next minute. As I looked at the timepiece, my hearing seemed to become hyperfocused. Despite being surrounded by beeping machines, multiple conversations, a fire alarm, and…

These strategies help me better prepare for surgery and recovery

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. “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…