A chronic illness diagnosis can be stressful, overwhelming, and scary, especially when the illness is rare and has no cure. When my daughter Bella was diagnosed with neuromyelitis optica (NMO) in 2017 at age 9, we were instructed by her doctors to spend one hour online learning everything we could…
Courage to Care – a Column by Candice Galvan
Today begins NMOSD Awareness Month, and to say that I have been busy preparing is an understatement. During the past month, in a push to have NMOSD Awareness Month recognized in all 50 U.S. states, I have applied for proclamations in my home state of Colorado, as well as…
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…
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…
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…
How I Found My ‘Courage to Care’
Some people are natural-born performers, leaders, artists, lawyers, doctors, or teachers. I like to say I was born to be a caregiver. Some of my first memories are watching over my younger sister and cousins while we were growing up. I like to think that caregiving is something that runs…
Recent Posts
- New biomarker may help gauge disease severity in NMOSD
- The longest night of the year offers hope of brighter days with NMOSD
- Advanced plasma exchange therapy effectively eases NMOSD attacks
- Reaffirming that access to healthcare is a human right
- Brain, spinal cord shrinkage linked to distinct NMOSD outcomes: Study
- Reflecting on what I’m grateful for softens the edges of NMOSD
- When my invisible illness meets my very visible disabled parking spot
- Study IDs environmental factors tied globally to higher NMOSD risk
- Inflammatory protein S100A9 ID’d as new treatment target in NMOSD
- Connecting with others who have NMOSD gave me hope