Years ago, I heard someone in the chronic illness community say they were “medically retired.” It was before I had fully accepted the idea of being disabled, and I thought it was the greatest euphemism I’d ever heard. Until recently, that’s how I described myself, too. But now that…

The Foundation for Sarcoidosis Research (FSR) has launched the Coalition for Clinical Trial Equity, aimed at increasing the representation of Black and African American sarcoidosis patients in trials testing potential treatments. Despite Black Americans being 2.5 times more likely to have sarcoidosis than white Americans, these patients…

I think I need a Bubble Wrap suit. Yep — a full-sized, head-to-toe suit made of industrial-strength protective Bubble Wrap. That (not Obi-Wan) just might be my only hope. My medical records indicate that I’m a “fall risk.” As much as I hate seeing that, I get it. I fall…

Early on in my chronic illness journey, before I knew I had sarcoidosis, I was struggling. I desperately sought answers about what was happening to me, not only physically, but also in other ways, like what my life would look like moving forward, how much of it I’d lose,…

Call me naive. For years, I never understood why my cousin posted the time on Facebook every afternoon. I thought the Doobie Brothers were just a musical family, like the Pointer Sisters or the Jonas Brothers. (They weren’t.) My husband often teases that I grew up “under a…

I was watching the “Morning Joe” talk show this morning — well, not really watching; it was more like background noise while I worked on a few things — when something caught my eye (or, more accurately, my ear). The hosts were introducing a guest who’d just…

“’Hang on a sec, hon,’ I called to my husband in the car, at the airport, and again on the plane. ‘I want to get a good shot. I’m sure something from this trip will work its way into my next column.’” That’s how I started my column one…

The European Medicines Agency (EMA) has granted XTMAB-16, Xentria‘s investigational antibody therapy, orphan drug designation for sarcoidosis. The status is intended to help speed the development of therapies that would fulfill an unmet health need for people with life-threatening or chronically debilitating rare diseases, which are defined as…

Bracelets with messages meant just to cheer me, Wireless earbuds when anyone’s near me, Cute comfy PJs without a drawstring, These are a few of my favorite things. The holidays are upon us, and while that should be a time of joy and celebration, of love and…

EFZO-FIT, a Phase 3 trial that’s testing treatment candidate efzofitimod in people with pulmonary sarcoidosis, is continuing  following a pre-planned interim safety review, with enrollment expected to finish in the first half of 2024. A data safety and monitoring board (DSMB) examined the trial’s available safety and tolerability…