The other day I was surprised by a knock on my door, and even more surprised to hear the response when I asked who it was. It sounded like he said Jamaal Bowman — my congressman. It even sounded like his voice, which I recognized from countless interviews,…

This week marks my one-year anniversary as a columnist for Sarcoidosis News. I once read that we tend to underestimate how much our lives can change in a decade, but overestimate the potential change in a year. With all due respect, that person hasn’t seen my life! There…

The Foundation for Sarcoidosis Research (FSR) has hosted a virtual session attended by people with pulmonary sarcoidosis and representatives from the U.S. Food and Drug Administration (FDA). FDA Patient Listening Sessions are small, informal, non-public meetings that discuss medical conditions from a patient’s perspective. The sessions seek to…

After the success of its virtual event last year, the Foundation for Sarcoidosis Research (FSR) is gearing up to once again host an online summit for all those impacted by sarcoidosis. The “Third Annual Global Virtual Patient Summit: Unveiling Possibilities” is set for July 30–31. Billed as the…

Before I was diagnosed with sarcoidosis, I’d never heard of this disease. No one I knew had heard of it, either, except, as my mom insists, in the differential diagnosis on the TV procedural “House, M.D.” Even then, it was never the answer. No one actually had sarcoidosis.

XTMAB-16, Xentria‘s investigational antibody-based therapy for treating sarcoidosis, was able to reduce the formation of granulomas — the abnormal clumps of immune cells that mark the disease — in a patient-derived cell model of granuloma, the company reported. The data were presented in a poster titled “XTMAB-16…

Every year around this time, between Father’s Day and my June 24 birthday, I feel a little disconnected and withdrawn. I was raised by a single mom who served as my mother and father, so maybe I’m missing her more than usual. We used to celebrate my grandfather and my…

People sometimes say their cars are an extension of their personality: sporty, sexy, rugged, classy, adventurous — any of the descriptors used in commercials. I take that idea a bit further. A true extension of my personality, my car is a little ridiculous and a lot of fun, and she…

May has not been my favorite month for many years. I lost my mother suddenly over Mother’s Day weekend in 2003, and later lost one of my favorite aunts in May 2006 and my maternal grandmother in May 2007. On May 19, 2018, I suffered a second spontaneous…

Earlier today, I scheduled appointments for my husband and me to see our primary doctor and pulmonologist. I also rescheduled appointments with my cardiologist, neurologist, endocrinologist, and ophthalmologist, all of which I’d had to cancel recently because I was too sick to go to the doctor. There really is such…