The first time I sat in the infusion chair to receive Ultomiris (ravulizumab-cwvz), I felt something I hadn’t experienced for a long time after being diagnosed with neuromyelitis optica spectrum disorder (NMOSD): hope. I needed this therapy to bring stability back to my life, to spend less time in…
I had waited 16 years to hear one of my favorite bands of all time perform, as their catalog of music was the soundtrack to my youth. That’s how long Oasis, one of the most iconic bands of the 1990s and early 2000s, had been absent from North America —…
I’ve always been a superstitious person. It started by listening to tales about my oma (grandma), who was a believer in the dark arts. My greatest memory of her is from one evening when she called everyone to say goodbye, knowing she would pass away the next day. And she…
In the five years since my daughter Bella, 14, was diagnosed with neuromyelitis optica (NMO), I have just barely come to accept that we may never know how or why she developed the disease. As Bella’s mom, I’ve spent countless sleepless nights filled with guilt and worry that something…
I still remember the feeling of despair I had while sitting on a cool stretcher in the neurologist’s office, after hearing devastating news about my health. The neurologist admitted that he had no idea what I had, but he assured me it was a severe condition. I wondered why after…
This column is a message to all of the patients currently undergoing an extended hospital stay. I know it is easy for people to share encouraging words when they aren’t the ones in a difficult situation. But let me just say that I know what you are going through. Unfortunately,…
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