Careful evaluation is required to distinguish among sarcoidosis, silicosis, and silicosarcoidosis, three disorders that can cause similar patterns of lung problems in people exposed to silica, but that progress and respond to treatment differently. A team of scientists in Brazil highlighted the challenges of distinguishing among the three conditions…
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When I was diagnosed with sarcoidosis, I immersed myself in the community and made April — which is Sarcoidosis Awareness Month — my busiest time of the year. I dressed, accessorized, and dyed my hair purple, the official color of sarcoidosis awareness. I created walkathons and other awareness events,…
I recently opened a fortune cookie to reveal a message saying, “Your education will empower you to make informed decisions in your professional life.” That may have been true in my career, but it feels even more so now in my life as a professional patient. I don’t remember the…
When I learned that New Edition, Boyz II Men, and Toni Braxton were touring together, I knew my husband and I had to go. We grew up on their music, and songs from 20, 30, even 40 years ago still make my heart sing (they make me sing, too, but…
How do you celebrate an awareness day, week, or month? I know how we celebrate other special days on the calendar. New Year’s Eve? Watch the ball drop and kiss at midnight. Passover? Dinner with the family, and no bread for a week. Birthdays? Celebrate with loved ones, perhaps dinner…
Over the weekend, I went to see the Harlem Globetrotters on their 100 Year Tour. I’d seen them as a child, but since I only started watching basketball a couple of years ago, I’ve gained a new appreciation for their incredible skill. The shots they take, the stunts, the acrobatics…
Last week, I met with a new hepatologist to address concerns about my liver function tests. The week before, I had a follow-up with the neurologist who’s been treating my sarcoidosis-associated small fiber neuropathy for years. At both appointments, my doctors asked permission to use artificial intelligence (AI) to…
When I received my Social Security Disability retro check after a two-year appeal, the first thing I purchased was a mobility scooter. I had rented one for a couple of advocacy trips and a vacation by then, and knew it would be best to have my own. Consequently, it seemed…
Over the past two decades, I’ve gone from being an active, fit young woman to an overweight, disabled old lady dealing with a range of chronic illnesses. This transformation hasn’t been a straightforward journey; it has been filled with obstacles, detours, and dead ends. Some days, my sarcoidosis symptoms…
“This is a true story based on a lie.” That’s how each episode of “Apple Cider Vinegar,” a Netflix series released earlier this year, begins. The show tells the story of Belle Gibson, an Australian wellness influencer, app developer, and cookbook author. Through sharing her story about her…