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.

How I avoid getting sick with aHUS and two young children

Fifteen milliliters of children’s ibuprofen, a 75-count pack of Clorox disinfecting wipes, boxes of Kleenex with aloe, a large can of Lysol disinfectant spray, filled hand-soap dispensers at each sink, an empty trash can, rubber gloves, and antibacterial dish soap. That all may sound like an advertisement for a drugstore,…

A simple sandwich offered new hope when I needed it most

It was the first time in four weeks I’d been hungry — actually, truly hungry. My mouth watered at the thought of a fresh, hot breakfast. During my stay in the intensive care unit (ICU), I’d lost 20 pounds and a great deal of muscle mass and was growing weaker…

Losing my identity after I had to stop working due to aHUS

Employment: Dare I say it’s a necessary evil? American culture is very career-focused. Everything costs money, which most people earn by working. And with the cost of living creeping higher each year, many are working more than ever just to make ends meet. But what happens when you suddenly become…

Just how rare is atypical hemolytic uremic syndrome?

What constitutes a rare disease? In the U.S., the Orphan Drug Act defines a rare disease as any disease affecting fewer then 200,000 people. The National Organization for Rare Diseases (NORD) reports that over 10,000 rare diseases exist. That’s way more than I would’ve imagined. Let’s compare a…

Star fruit dangers: An innocent treat is a threat to my kidneys

Star fruit: It’s sweet, crisp, bright, refreshing and, for me, potentially deadly. Starbucks’ Kiwi Starfruit Refreshers (now discontinued), star fruit margaritas, or any other star fruit treats I once enjoyed are all a “no” for me now. Sadly, the fruit, also known as carambola, is something I just can’t…

Getting diagnosed was only the beginning of my aHUS journey

Thrombocytopenia, liver failure and hematoma, hysterectomy, end-stage renal disease, hypertrophic cardiomyopathy, uncontrolled hypertension, chemotherapy-like side effects, muscle atrophy, post-traumatic stress disorder, chronic fatigue, edema, May-Thurner syndrome, nerve damage, and anemia. That’s a “quick” list of the comorbidities that accompanied my atypical hemolytic uremic syndrome (aHUS). Being diagnosed with a…

Handling the financial burdens of a chronic illness, part 2

Second in a series. Read part one. Which is more important, your cellphone or your internet? That can be a tough decision, driven by finances and circumstances. On one hand, imagine you have a chronic illness and you need a phone for emergencies. On the other, imagine your phone…