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The daily grind of ingesting pills for my neuromyelitis optica spectrum disorder can be very disheartening. There is medication for my nerve pain, to combat the fatigue, to manage the overall pain, to help me sleep. There are even pills to offset the heartburn that happens because of all the…

For the first 10 years after I was diagnosed with neuromyelitis optica (NMO), I chose to keep my condition private because I worried about how others might perceive me. But over the past two years of the pandemic, I’ve made the conscious decision to own my truth. I’ve been…

At first glance, many might say that our family appears totally healthy. However, my daughter Bella, 13, fights neuromyelitis optica (NMO) every day, and despite being her caregiver, I have health issues of my own. When Bella got sick in August 2017, I was almost done with the classes…

Feeling misunderstood is one of the biggest challenges I face with neuromyelitis optica (NMO). This week, we took our daughter sledding with a couple of friends. Sledding is a Canadian rite of passage, though I’ll admit it feels dangerous most of the time. Our brave 9-year-old, prepared with a helmet,…

The Sumaira Foundation (TSF) seeks to raise $250,000 for research into neuromyelitis optica spectrum disorder (NMOSD) and related disorders at its 5th NMO Awareness Gala, set for March 26. The Hollywood-themed event will be held at the Mandarin Oriental hotel in Boston. For ballroom entry, all attendees must…

Most nights, I can’t wait to go to bed. I’ll rush through my bedtime routine, but even though I’m beyond exhausted, I can’t seem to fall asleep. It secretly irks me to be the only one in my household still awake at night. Even my pug, Magnus, who normally barks…

During the six weeks that my daughter Bella, 13, was hospitalized at Children’s Hospital Colorado for a neuromyelitis optica (NMO) attack in 2017, my husband and I kept vigil at her bedside. Too worried to sleep, we prayed for a miracle every night. As soon as we received Bella’s…

Neuromyelitis optica (NMO) isn’t all bad. Hear me out. Sure, the needles, pain, and endless worry about permanent paralysis and vision loss are no fun, but there’s a silver lining if you know where to find it. At the start of every year, I think about all of the people…

I am one of the few lucky ones who really enjoy what they do for a living, but that’s probably because I’ve taken control of my destiny. I am constantly reinventing myself and building the career I want. This became even more important after I was diagnosed with neuromyelitis…

The National Organization for Rare Disorders (NORD) asks Americans to plan ahead to participate in the Light Up for Rare campaign to raise awareness of rare diseases. NORD is the U.S. sponsor for Rare Disease Day on Feb. 28. The annual awareness day spotlights approximately 7,000…