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…
parenting
One of my greatest fears has come to fruition. Last week, my daughter was diagnosed with vitiligo, a disorder that causes the body’s immune system to attack skin cells that produce melanin, causing the skin to lose its color. Upon hearing the diagnosis, I felt the air leave my lungs,…
More than half of women with neuromyelitis optica spectrum disorder (NMOSD) have never discussed pregnancy with their neurologist, and over 40% report that their pregnancies were unplanned, according to data from a survey-based study in Argentina. This lack of communication means that many women with NMOSD may enter pregnancy…
I thought I had put on a brave face and spoken in a calm tone. I’d told my daughter that I’d been to the emergency department at the hospital many times before, so it wasn’t a big deal. I’d be home before her bedtime. Three hours in, she started to…
Biting into a raw lemon is always a shocking experience no matter how many times you’ve done it. The smell of a lemon may be fresh and inviting, but the taste? Not so much. Yet when you take a sip of fresh lemonade on a hot day, it’s pleasant and…
2023 was an incredible year for my family and me, full of growth, learning opportunities, job promotions, travel, mostly good health, and advocacy. At the beginning of last year, I set a goal to use my voice and spent the year advocating for my 15-year-old daughter, Bella, and everyone…
Children don’t see race, age, wealth, weight, or disability, we’re told. Instead, they look for unconditional love. I believe that’s true until a certain point; then their innocence is forever lost. My 11-year-old daughter, Sophie, has always been a generous person. Even when she began to grow up and realize…
Summer for most teens is a time to relax, stay up and wake up late, enjoy time with friends, and be free from the demands and stress of high school. For my 15-year-old daughter, Bella, though, summer has been a time to catch up on schoolwork so she’ll pass ninth…
The past few years have been challenging for me, my family, and especially my youngest daughter, Bella, who in 2017 was diagnosed at 9 years old with neuromyelitis optica spectrum disorder (NMOSD). At the time, the best course of therapy recommended by Bella’s neurologist was Rituxan…
A 15th birthday is a special event for a teenager. Whether you have a big celebration with lots of friends and family, or a small gathering with loved ones and furry friends, having the opportunity to celebrate another trip around the sun is memorable and fun. In my Mexican culture,…
Recent Posts
- NMOSD therapy linked to fewer attacks, less disability in Chinese study
- Where I go to recharge from the daily challenges of NMOSD
- Clinical trial data show NMOSD treatment reduces relapses
- Living with NMOSD means learning how to combat decision fatigue
- Immunosuppressive treatment may lower DN-NMOSD relapse risk