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…
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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…
I have a confession to make: I don’t read all my email. I try to, but it can be overwhelming. Instead, I skim through my inbox to see if I need to read anything right away, then bookmark things I’ll get back to later. Sometimes I’m too delete-happy with the…
I started writing this column a few weeks ago when I was angry. I was irate, it was festering, and I had to get it out. I started jotting down my thoughts, with the clickety-clack of my nails on the keyboard beating harder and faster than usual. If I were…
The final participant has completed the last visit as part of EFZO-FIT, a Phase 3 clinical trial testing Atyr Pharma’s experimental treatment efzofitimod, in adults with pulmonary sarcoidosis. Top-line results are expected in the coming months. “Completing this first-ever global Phase 3 and largest interventional study conducted for patients…
Most people with inflammatory conditions reported overall satisfaction, convenience, and confidence when self-administering Acthar Gel (repository corticotropin injection) through a single-dose, prefilled injector called SelfJect. That’s according to a survey-based study sponsored by the therapy’s developer, Mallinckrodt. The study involved 54 patients living in the U.S., eight of…
Writer’s block: when you want (or have) to write something but the words just won’t come to you. It could be for a school paper, a business report, a personal story, a speech, or a simple social media post, but it happens to all of us. We think. We…