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When the Caregiver Needs Care

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…

Making Every Second Count While Waiting for a Miracle

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…

Why Work Is Important to Me as an NMO Patient

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…

Finding Connection and Community in Support Groups

After experiencing all of the challenges that came with my 13-year-old daughter Bella’s neuromyelitis optica (NMO) diagnosis and the rareness of the disease, I wanted to find a way to connect with other NMO patients and caregivers. Bella was so young that I felt I needed the connections to…

The Misery of Shingles

I noticed recently that my left eye was irritated. It felt sunburned, which seemed odd given that it’s late autumn on the west coast of Canada, which means it’s chilly and wet. It was bothering me enough that I looked in the bathroom mirror to see what the…