People with neuromyelitis optica spectrum disorder (NMOSD) who have experienced only one relapse tend to underestimate their risk of future relapses, but patients who’ve had multiple relapses tend to overestimate this risk, a small study has found. The findings underscore the importance of clear communication with healthcare providers so…
NMO Awareness Month
March 1 kicks off NMOSD Awareness Month, which aims every year to shed light on the experiences of people living with neuromyelitis optica spectrum disorder (NMOSD). The Sumaira Foundation (TSF) has led the month-long advocacy initiative in the U.S. since 2016, promoting efforts to spread knowledge about the…
People with neuromyelitis optica spectrum disorder (NMOSD) experience faster disability progression with fewer attacks than those with myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD), a related condition, according to a long-term analysis of German registry data. Notably, in all patients, experiencing inflammation in the optic nerve, which transmits signals between…
I love the fall. It’s the perfect balance of weather between the summer’s heat and the winter’s snow. I love wearing layers of clothing, and when the leaves on the trees change their colors it means we’re closer to my favorite holiday, Thanksgiving. I also love the fall because there…
Problems in the autonomic nervous system (ANS), which regulates involuntary bodily processes such as heart rate, blood pressure, and digestion, are very frequent among people with neuromyelitis optica spectrum disorder (NMOSD), a study has shown. All 80 NMOSD patients in the study experienced ANS-related symptoms, and a greater burden…
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…
The U.S. Food and Drug Administration (FDA) has asked for modifications to the risk evaluation and mitigation strategy — known as REMS — for Ultomiris (ravulizumab) before approving the therapy for most adults with neuromyelitis optica spectrum disorder (NMOSD). Ultomiris already is available in the U.S. for treating…
You can’t find it if you don’t know what you’re looking for. That’s how I feel every time my Facebook and Instagram communities related to neuromyelitis optica spectrum disorder (NMOSD) discuss a news topic I hadn’t heard about. I’m left madly searching the internet to get caught up. Meta,…
There’s no way to fully prepare for a flare-up of neuromyelitis optica spectrum disorder (NMOSD) when I’m traveling, though I try. I’ve invested in additional travel insurance when out of the country, thankfully never having to use it. I bring records of all my medications should a treating…
When the immune system launches an attack to fight off a cytomegalovirus infection, immune cells may accidentally target aquaporin-4 (AQP4), a protein found at the surface of neuron-supporting cells. That’s the hypothesis suggested by researchers who analyzed the immune cell receptors of people with and without neuromyelitis optica spectrum…
Recent Posts
- 2 approved treatments for NMOSD may work better than off-label one
- It’s important to realize when the caregiver needs care
- MRI scan of waste system in brain may track NMOSD severity, progression
- My mom’s example of strength still guides me in life with NMOSD
- Short course of approved drug effective for treatment-resistant NMOSD