In 2020, SRNA in collaboration with The Sumaira Foundation and the Guthy-Jackson Charitable Foundation launched a podcast series called “ABCS of NMOSD”. This education series is made possible through a patient education grant from Horizon Therapeutics. The series brings together the latest information and research about all things Neuromyelitis Optica Spectrum Disorder (NMOSD), from diagnosis and treatment to quality of life and what it’s like to live with NMOSD.
Since then, we’ve published over 20 episodes with medical professionals, researchers, individuals diagnosed with NMOSD, caregivers, and allied health professionals.
This week, we’re sharing our top five favorite episodes, along with other great resources for NMOSD available in our Resource Library.
#1 – I Have NMOSD. Now What?
This episode is one of our most listened to – and was also our very first! Dr. Michael Levy defines neuromyelitis optica spectrum disorder (NMOSD) and explains the history of the disease. He discusses potential causes and diagnostic criteria. Finally, Dr. Levy describes acute treatments, short-term expectations after diagnosis, and preventative treatments. Listen to the full episode here.
#2 – Explaining NMOSD to Others
In this episode, Chelsey Judge, PhD, from the Connor B. Judge Foundation and Sumaira Ahmed from The Sumaira Foundation help explain NMOSD through their personal experiences. They share how they describe NMOSD to others, including the disease mechanism and ongoing symptoms. Finally, they talk about hope for the future and promising research developments for NMOSD. Listen to the full episode here.
#3 – Choosing a Long-Term Treatment Option
Drs. Benjamin Greenberg, Brian G. Weinshenker, and Stacey Clardy join the second episode of ABCs of NMOSD, entitled “Choosing a Long-Term Treatment Option.” The experts give an overview of the most common treatments for NMOSD and their side effects. They talk about factors to consider when choosing a treatment option, reasons why a person might switch treatments, and insurance implications. Finally, they discuss pediatric considerations for treatment, how to find research studies and trials, and supplementary treatments for NMOSD in addition to medication. Listen to the full episode here.
#4 – MOGAD and NMOSD: Is MOGAD Part of NMOSD or a Distinct Diagnosis?
In this episode, Dr. Eoin Flanagan outlines the similarities and differences between MOG antibody disease (MOGAD) and NMOSD. He discusses the different treatments for each disorder and how they are distinguished from multiple sclerosis. Dr. Flanagan shares the history of these disorders and why it is important to differentiate them. Finally, he describes how people diagnosed with MOGAD and NMOSD can receive medical care and what they can expect for the future. Listen to the full episode here.
#5 – COVID-19 and NMOSD
Our final favorite episode is another featuring Dr. Michael Levy. He began with an overview of how people with NMOSD have been affected by COVID-19 in comparison to the general population. He then discussed vaccines and the data that has been collected so far on its efficacy in people with NMOSD. Finally, Dr. Levy gave an update on the ongoing research that is being conducted on COVID-19 and people with NMOSD. Listen to the full episode here.
If you haven’t, we highly recommend checking out these episodes! However, if you already have, or if podcasts aren’t really your thing, there are plenty of other helpful resources to choose from.
Rewatch the 2022 RNDS presentation, What are the long-term treatments for NMOSD and MOGAD?, with Dr. Anastasia Vishnevetsky. Listen to learn all about the different ongoing therapies and strategies used in NMOSD and MOGAD today.
Curious about social disparities impacting NMOSD patients? Then watch Assessing the Impact of Social Disparities of Health on Disability and Access to Care in NMOSD Patients from our 2021 RNDS. Dr. Sammita Satyanarayan presented a comprehensive overview of the research study titled “Assessing the impact of social disparities of health on disability and access to care in NMOSD patients.” She was the recipient of a progress grant from SRNA.
Dive into research with a published summary: Outcomes of coronavirus disease 2019 in patients with neuromyelitis optica and associated disorders by Loupre and colleagues. The study looked at those with neuromyelitis optica spectrum disorders (NMOSD) and MOG antibody disease (MOGAD) who had a confirmed diagnosis of COVID-19 or a highly suspected diagnosis of COVID-19. They included 15 patients from 11 centers in France.