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What does it take to be a rare disease patient? An immense amount of time and patience. Buckets of both, preferably refillable. Even when you think things have settled and you’re managing your health well, something pops up. After many years with neuromyelitis optica spectrum disorder (NMOSD), I’ve come…

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.

There are some days (or weeks) when it feels like the world is coming at you hard and there’s nothing you can do about it. Life can be messy. I had a day like that just last week. So how do you power through when everything is a priority, but…

If I had a dollar for every time someone said, “I shouldn’t complain to you,” I could probably fund my own research grant. It usually happens right after someone shares something stressful, such as their work drama, tough dental work, or a recent bad infection, and then suddenly they remember…

I’ve been a list builder for as long as I can remember. Even as a kid, I found comfort in writing things down, mapping out what needed to be done, and crossing items off one by one. Lists gave me structure. They still do. I like to stay busy, not…

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.

During a recent appointment with my general practitioner, I was surprised that I didn’t have to wait. She called my name just five minutes after my scheduled time and apologized for being late, though I didn’t feel that she was. At the start of our visit, she explained that her…

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…