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…

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…

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…

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…

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…