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Note: This column discusses an upcoming FDA-NIH Rare Disease Day event, which planned to bring together members of the rare disease community with healthcare providers, researchers, lawmakers, and more at the NIH main campus in Bethesda, Maryland. That event has since been postponed. Stay tuned for further announcements. There’s a…

I recently came across a blog post on MedPage Today titled “A Letter to Patients with Chronic Illness.” Although it was written nearly 15 years ago, it’s as relevant today as it was then, revealing oft-obscured insight into the frame of mind of our doctors. Its author, “Dr. Rob,” shares…

Along with so many others around the world, I’ve spent the past two months utterly obsessed with the movie version of “Wicked.” I saw it on the big screen (twice), read the book (again), and bought the digital version just minutes after it became available. I’ve watched it…

It’s pretty rare to see sarcoidosis portrayed on a television show that’s not a medical drama. It’s even rarer to see it represented accurately. So when I heard the word on the new Netflix series “No Good Deed,” my ears perked up and I dropped what I was doing…

Oops, I did it again/ I fell on the floor/ I’m in so much pain/ (Oh baby, baby)/ Now my arm’s in a cast/ Let’s hope it’s the la-a-a-ast/ I’m not that confident (sigh).  Kerry is always coordinated, even with her cast. (Courtesy of Kerry Wong) That’s how that…

“What are you trying to do — fun me to death?” I asked my husband when he suggested another road trip this month. We’ve been making the most of our time together since he retired a few months ago, trying to do all the things he rarely had time for…

Have you ever read something and just said to yourself, “Yes. YES. Oh my God, yes. 100% yes. So much yes!”? Have you read something that made you feel gutted — both out of anger that anyone should be made to feel a certain way and sadness because you feel…

As I write this, my heart is racing. My head is pounding. I feel like my world is spinning so fast I can’t keep up. I’ve actually just gotten good news, but the anxiety that preceded it takes much longer to subside. I generally subscribe to the “hope for the…

One of the most stressful aspects of rare disease life is visiting a new doctor. You’d think we’d be used to it — after all, we do it often enough. But between the sheer volume of information we have to share and the limited time we have to share…

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…