Columns

I’ve always loved bright lipstick colors. The bolder, the better, in my opinion. There’s something delightfully defiant that makes me smile about catching my reflection in a window and seeing a pop of fuchsia or fire‑engine red. It’s hard not to feel at least a little cheerful when your lips…

I’m a self-sabotaging, push-the-limits kind of gal. The worst kind of patient. The sort of patient doctors warn their interns about. Yes, I know I should be following their recommendations, nodding politely when I’m told what to do, but my neurologist and I both know that I probably won’t listen.

Ever get that quiet, nagging sense that something in your body just isn’t right? For me, it started with extra trips to the bathroom — nothing dramatic, just enough to make me pause. Before long, I realized I was dealing with yet another bladder infection. Living with a rare autoimmune…

Note: This column describes the author’s own experiences with Ultomiris (ravulizumab-cwvz). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. When Alexion Pharmaceuticals first approached me about being featured for Rare Disease Day on Feb. 28, I initially declined the offer.

Pain is received differently by everyone, but I believe most people with neuromyelitis optica spectrum disorder (NMOSD) develop an unusually high tolerance. Once we adjust to a new normal, we find ways to exist inside it, ways of holding ourselves, bracing ourselves, and moving through the world that help…