Walking On Water — Shalana Jordan

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: 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…

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…

Last in a series. Read parts one and two.  A bead of sweat rolls down my forehead and over my brow. Flinging the bedsheets away gives me a blast of crisp cool air, and I realize how clammy and hot I am. I didn’t feel well when I…

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…

This column is the first in a three-part series about the financial burdens of rare diseases and chronic illnesses. $1.3 million. $1,500. $84,000. Those are some of the costs I was left with when I nearly died of atypical hemolytic uremic syndrome (aHUS) in 2020. My hospital bill for…