As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking.  But exactly how expensive — in terms of direct and indirect costs across rare disease populations — might still come as a surprise: almost…

Cells of the innate immune system called monocytes can be useful biomarkers to predict the outcomes of people with sarcoidosis, a recent study has found. The findings showed that patients with low levels of blood monocytes at diagnosis were more likely to achieve remission after two years and had…

I was in my 40s when I entered a neighborhood gym for the first time. I slunk over to the least-crowded row of treadmills, and still couldn’t shake the feeling of being watched. Until then, my huffing and puffing had been done in private. But after my treadmill died, my…

Xentria is seeking regulatory approval to begin clinical trials to test XTMAB-16, its investigational TNF-alpha inhibitor for the treatment of sarcoidosis. Xentria submitted the request — in the form of an investigational new drug (IND) application — to the U.S. Food and Drug Administration (FDA) on Feb. 26. The…

I view my biological clock as a stubborn, old mule. She dictates her pace, and getting her to change is hard. Real hard.  She wants no part of the foolishness known as daylight saving time (DST). But the U.S. is among fewer than 40% of countries worldwide that…

I know playing “what if” is a useless exercise when it comes to sarcoidosis. But during a four-day stint without cellphone coverage or internet access, I found myself doing it anyway.  This disease has many scary aspects, such as cardiac involvement, which I wrote about earlier this month. And…

The U.S. Food and Drug Administration (FDA) has accepted and granted priority review to an application for Esbriet (pirfenidone) as a treatment for unclassifiable interstitial lung disease (UILD). The supplemental new drug application was submitted by Genentech, Esbriet’s developer and a member of the Roche Group, based on…

Many call it “heart attack snow.” It’s heavy. It’s backbreaking. Last week, we went head-to-head. In “Terminator” terms, the snow was the advanced T-3000 cyborg. I was “Pops,” the old T-800 out to prove I wasn’t obsolete. I’m used to sarcoidosis putting me through the wringer emotionally. But fluffy…

“I can be changed by what happens to me. But I refuse to be reduced by it.” — Maya Angelou Last year, my primary pulmonologist and I decided to get a second opinion about my pulmonary sarcoidosis, as well…