NMO Awareness Month

This week, my sweet girl, Sophie, has turned the big 10. I’m feeling all verklempt because they told me she couldn’t exist. But doctors are wrong sometimes, and I’m glad I trusted my gut. Twelve years ago, little information was available about neuromyelitis optica (NMO), and even less about…

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…

The phrase “fake it till you make it” is meant to encourage self-confidence. During many tough moments in my life, like learning to walk again, I’ve relied on this phrase. There are moments when I don’t feel good, but I’ll fake it and say I feel fine. Sometimes saying how…

A specific pattern of brain inflammation called BPCLI sometimes can occur in people with neuromyelitis optica spectrum disorder (NMOSD), and often is associated with encephalitis-like symptoms that may contribute to misdiagnoses. A study with that finding, “Bilateral parafalcine cortical and leptomeningeal impairment: A characteristic pattern of MOG antibody…

Summer is one of my favorite times of the year. The days are longer, the adventures seem endless, and the smell of barbecue, flowers, and freshly cut grass fill the air. However, high temperatures during the summer, especially in tropical climates, can pose a challenge for those with neuromyelitis…

I know it’s not a popular choice, but I enjoy sweet and tart zinfandel. I like the delightful pink color, and rosé is a snobby word that’s fun to say. Zinfandels should be enjoyed in the warm summer months, and are accompanied best by seafood. Maybe it’s just the…

March 25 was a day I won’t soon forget. My 13-year-old daughter, Bella, and I jetted off to Boston to attend The Sumaira Foundation’s 5th Annual NMO Awareness Gala at the Mandarin Oriental Hotel the following day. The trip took a few years of planning and preparation, including surviving…

The video series “Imagine My Life With NMO” has been launched by the Sumaira Foundation to help others in understanding what daily life can be like with neuromyelitis optica spectrum disorder (NMOSD). In the series, Sumaira Ahmed, the European foundation’s creator and a NMOSD patient, interviews other patients, their loved…

It didn’t start as a windy day. The sun beaming down on my face felt oh so good. Spending time on the water with my family was one of my favorite activities. At first, I thought Dad’s 28-foot boat purchase felt excessive, but when we piled our entire family onto…

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…