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…
NMO treatments
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…
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…
As someone with neuromyelitis optica (NMO), I am no stranger to steroids. Like most NMO patients, I have a love-hate relationship with them. I jokingly refer to them as “the devil’s Tic Tacs” because of the potential side effects, many of which can be quite serious. On the flip side,…
When I was misdiagnosed with multiple sclerosis (MS), and five years later, properly diagnosed with neuromyelitis optica (NMO), I was told that a hallmark symptom of each disease was optic neuritis. This occurs when the immune system mistakenly attacks the optic nerve, causing inflammation, which can lead to…
Six months ago, a blood test revealed that I had developed a rare side effect — a condition called hypogammaglobulinemia — from a biologic I’ve been on for five years for neuromyelitis optica (NMO) as well as two types of arthritis.
My heart goes out today to the neuromyelitis optica (NMO) patients in Cuba for two reasons. Firstly, it is difficult for them to access treatment right now. Secondly, the island is experiencing tropical weather. Neither factor is helpful for NMO patients. Mileidys wonders if we are in the…
When I was diagnosed with neuromyelitis optica (NMO) in 2012, the U.S. Food and Drug Administration (FDA) hadn’t yet approved any medications specifically to treat this disease. However, doctors could select various therapies to help patients prevent or deal with attacks. When NMO patients had an attack, doctors treated…
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