children

Having neuromyelitis optica spectrum disorder (NMOSD) means Mother’s Day hits me a little differently. It’s not just a holiday; it’s a milestone, a victory lap, and sometimes a quiet exhale of relief that I’ve made it to another year of being “Mom.” This year feels especially meaningful, because my…

Undergoing plasma exchange, a blood-cleaning procedure, within 10 days after a relapse of neuromyelitis optica spectrum disorder (NMOSD) may help ease symptoms in children positive for antibodies against AQP4 and who do not respond well to corticosteroids. That’s according to a small study that assessed the safety and efficacy…

Rituximab may be effective for improving functionality in children with neuromyelitis optica spectrum disorder (NMOSD) or other inflammatory neurological disorders, though more research is needed to identify optimal treatment regimens, a new study reports. “Efficacy of [rituximab] in specific indications and good tolerance are confirmed in pediatric neurology.

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…

In my family, I am the third child of four, the daughter of proud, immigrant parents. I grew up in small towns until I finally relocated to Toronto in my early 20s. Growing up, I only knew one kid with an illness, and she entered my life as quickly as…

The National Alliance for Caregiving, in partnership with Global Genes, has issued a free guidebook, available online, that offers resources and support for caregivers of children with rare diseases. “The Circle of Care Guidebook for Caregivers of Children With Rare and/or Serious Illnesses” was designed…