Walking On Water — Shalana Jordan

Walking on Water BANNER

Shalana “Shay” Jordan of central Florida, is a photographer, writer, retired educator, and mom of two boys. She’s navigating life with her “new normal” of battling atypical hemolytic uremic syndrome (aHUS), stage 4 kidney disease, lupus, May-Thurner syndrome, immune thrombocytopenia (ITP), Thrombic thrombocytopenic purpura (TTP), and uncontrolled hypertension. She received her aHUS diagnosis in 2020 at 36 years old.

Being a part of the company that publishes this website, BioNews, means she can take part in helping fellow rare disease patients adjust to the new life that’s unfolding for them. Hearing someone else’s experience with the “unknown” is invaluable. Being rare can be very lonely, but BioNews advocates daily to help patients realize they’re not so alone after all. Because life doesn’t end at diagnosis.

Featured Post

My hysterectomy was one of the easiest parts of my medical journey

This week marks the five-year anniversary of my hysterectomy, which I unfortunately had to have at only age 37. It was a huge, life-changing decision that would affect any plans to expand my family and could be dangerous if there were complications. This happened 10 months after I nearly died…

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…

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 road at 2 p.m. because rain was expected at 4. My legs and arms were hurting…

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.

Why I still worry about COVID-19 continuing to make the rounds

When I opened my eyes, all I could focus on was how much they were burning. They were watering, but that provided no relief because my tears were hot. No matter which position I lay in, I was uncomfortable. My skin was crawling and my mind was racing. My thoughts…

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…