ABCs of NMOSD

BIG ANNOUNCEMENT! Beginning January 5, 2026, SRNA is bringing all five of our podcast series together into a single, unified podcast channel called “SRNA Soundwaves.” This means that all episodes of "Ask the Expert, ABCs of MOGAD, ABCs of NMOSD, ADEM Academy, and Community Meets Clinic" - past and present - will now be found in one feed on Apple Podcasts, Spotify, and other podcast strea...

In this episode of "ABCs of NMOSD," host Landy Thomas, joined by Doug Newby, Heather Dawn Newbie, and Caitlyn Flickinger, discussed the impact of NMOSD on romantic relationships. The guests shared their personal experiences with relationships and how they manage living with NMOSD [00:02:27]. They also addressed how they met, support each other during treatment, and the importance of unde...

In the "ABCs of NMOSD" episode, Landy Thomas of SRNA was joined by Heather Dawn Sowalla and Dr. Meghan Beier to discuss post-diagnosis body dysmorphia in NMOSD patients [00:00:12]. Heather shared her misdiagnosis journey, the impact of steroids, and her coping mechanisms [00:06:24]. Dr. Beier highlighted the importance of finding a supportive community and suggested strategies for managing new ide...

In the "ABCs of NMOSD" episode titled, "Managing the Dread of Relapse," Landy Thomas of SRNA was joined by Heather Dawn Sowalla. Heather shared her journey with neuromyelitis optica spectrum disorder (NMOSD) [00:01:54] and discussed the fear of relapse associated with the condition [00:14:04]. She described how long-term misdiagnosis and numerous flares impacted her life and mental health [00:16:0...

In the “ABCs of NMOSD” episode titled, “Social Reintegration Following an NMOSD Diagnosis,” Landy Thomas of SRNA and Kim Jackson-Matthews discussed social reintegration following an NMOSD diagnosis [00:00:14]. Kim shared her diagnosis story, including the onset of symptoms and the challenges she faced [00:04:42]. They talked about the emotional impact of the disease, how it changed Kim's life, and...

In this episode of "ABCs of NMOSD," Landy Thomas of SRNA hosted a discussion about the experiences of men who are living with neuromyelitis optica spectrum disorder (NMOSD). Doug Kirby and Andrew Jopson shared their diagnosis journeys, highlighting the physical and emotional challenges they faced [00:04:20]. They delved into the impact of the disorder on their personal lives, careers, an...

For this “ABCs of NMOSD” episode titled, “Transitioning from Pediatric to Adult Care with NMOSD,” Dr. Jonathan Galli joined Krissy Dilger of SRNA. Dr. Galli provided insights into the disorder and its presentation across age groups, emphasizing the importance of aggressive treatment [00:01:35]. He highlighted differences in treatment approaches and medication availability between pediatric and adu...

Krissy Dilger of SRNA was joined by Dr. Robert Shin. Dr. Shin began by summarizing the role of neuro-ophthalmologists and how they specialize in the intersection of neurology and ophthalmology, and address vision-related issues, including those associated with neuromyelitis optica spectrum disorder (NMOSD). Dr. Shin talked about the tests used to diagnose visual issues. He discussed how distinguis...

SRNA's Krissy Dilger was joined by Dr. Hamza Coban to discuss neuromyelitis optica spectrum disorder (NMOSD) relapses. They discussed distinguishing between true relapses, pseudo relapses, and Uhthoff's phenomenon. Dr. Coban discussed the importance of early diagnosis and prompt treatment to prevent severe and debilitating symptoms. He described various treatments to prevent relapses. He a...

For this “ABCs of NMOSD” episode, Rebecca Whitney of SRNA was joined by Dr. Michael Levy. Dr. Levy gave an overview of I-CAN, a Phase 2 study of inebilizumab in children with aquaporin-4 positive neuromyelitis optica spectrum disorder or NMOSD. As one of the principal investigators for the study, he shared details about inclusion criteria and inebilizumab, brand name Uplizna™. Dr. Levy also discus...

Warning: This presentation contains adult language and content. It is not suitable for anyone under the age of 18. In this episode of “ABCs of NMOSD” titled “Sexual Dysfunction and NMOSD,” Krissy Dilger of SRNA was joined by Dr. Philippines Cabahug. Dr. Cabahug defined the types of sexual dysfunction for people who have impairment in the spinal cord. She summarized treatments that are available fo...

Dr. Mary Rensel and Dr. Amy Sullivan joined Krissy Dilger of SRNA for an “ABCs of NMOSD” podcast titled “Mental Health and NMOSD.” The experts began the conversation by sharing how behavioral medicine teams support people who are adjusting to a chronic disease or change of function. They also reviewed some of the tools that can enhance quality of life and address depression, fatigue, and pain leve...

Dr. Michael Yeaman and Dr. Terry Smith joined Krissy Dilger of SRNA for an “ABCs of NMOSD” podcast titled “What is Tolerization?" The experts began by giving an overview of immune detection and protection. They explained how immune tolerance is established. The experts provided information on how immune tolerance could be lost during autoimmune disease. Finally, they discussed how immune tolerance...

For this “ABCs of NMOSD” podcast titled "Long-Term Therapies in NMOSD," SRNA's Dr. GG deFiebre was joined by Dr. Dean M. Wingerchuk. Dr. Wingerchuk began by explaining the difference between acute versus long-term treatments and providing an overview of the most common long-term treatments for NMOSD. He then discussed side effects and effectiveness. Finally, Dr. Wingerchuk provided information on...

In this episode of ABCs of NMOSD titled “NMOSD and Pregnancy/Family Planning,” Dr. GG deFiebre of SRNA was joined by Dr. Anastasia Vishnevetsky and Dr. Tamara Bockow Kaplan. The experts discussed contraception and other factors that are important for people to plan with their neurologists and obstetricians. They talked about the implications of a relapse before or during pregnancy and how to appro...

Rebecca Whitney of SRNA was joined by Drs. Jayne Ness and Silvia Tenembaum for an ABCs of NMOSD podcast titled, “Pediatric NMOSD - Part II, Treatment and Symptom Management.” The experts began by explaining symptoms of pediatric NMOSD. They discussed acute and ongoing treatments, considerations (including vaccines), side-effects, and whether or not aquaporin-4 antibody levels are continuously moni...

For this ABCs of NMOSD podcast, "Insurance and Access to Care in the US," SRNA's GG deFiebre, PhD was joined by expert Marissa Shackleton, MS. The expert began by explaining the different types of insurance in the United States and providing an overview of common terms used while discussing insurance policies. She then discussed financial assistance programs and how to navigate medical costs when...

GG deFiebre, PhD was recently joined by Dr. Michael Levy for an ABCs of NMOSD podcast on "COVID-19 and NMOSD Updates." Dr. Levy 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 ong...

Dr. Hesham Abboud joined Dr. Chelsey Judge of The Connor B. Judge Foundation for an ABCs of NMOSD podcast entitled, "Navigating Treatment Options." Dr. Abboud began with an overview of treatments for NMOSD patients experiencing an acute relapse and the timing for introducing these treatments, as well as potential side effects. He talked about factors to consider during the Covid-19 pandemic and st...

Rebecca Whitney of SRNA was joined by Dr. Jayne Ness and Dr. Silvia Tenembaum for an ABCs of NMOSD podcast entitled, "Pediatric NMOSD - History and Diagnosis, Part I." The experts begin by explaining the history of pediatric NMOSD, including the first known cases and a research paper that was published on the subject. They then discuss how common NMOSD is in pediatric patients and the diagnostic t...

Dr. Brian Weinshenker joined GG deFiebre of SRNA and Jacinta Behne of The Guthy-Jackson Charitable Foundation for an ABCs of NMOSD podcast entitled, "History, Diagnosis, and Management of NMOSD." Dr. Weinshenker began with a history of NMOSD and how the aquaporin-4 antibody was discovered as a biomarker for NMO. He discussed other diagnoses that were historically used before NMOSD was coined, and...

GG deFiebre of SRNA is joined by Dr. Eoin Flanagan for an ABCs of NMOSD podcast on "MOGAD and NMOSD – Is MOGAD Part of NMOSD or a Distinct Diagnosis?" Dr. Flanagan outlines the similarities and differences between MOG antibody disease (MOGAD) and neuromyelitis optica spectrum disorder (NMOSD.) He discusses the different treatments for each disorder and how they are distinguished from multiple scle...

For this ABCs of NMOSD podcast, "COVID-19 and NMOSD," GG deFiebre of SRNA is joined by Dr. Michael Levy from Harvard Medical Center and Massachusetts General Hospital. Dr. Levy begins by explaining the risk associated with COVID-19 for someone diagnosed with NMOSD, and how medications such as rituximab may impact them. He discusses the current COVID-19 vaccines available and what people with NMOSD...

GG deFiebre of SRNA is joined by Ireland Thomas, a member of SRNA and person diagnosed with NMOSD. Ireland begins by describing her initial symptoms when she was six years old and her journey to getting an NMOSD diagnosis. She talks about the treatments she received and her experience as a child within the medical system. Ireland discusses how NMOSD impacts her life, including ongoing symptoms, he...

GG deFiebre of SRNA is joined by Kristen Hewitt, an SRNA support group leader, and person diagnosed with NMOSD. Kristen begins by describing her initial symptoms and her journey to getting an NMOSD diagnosis. She talks about the treatments she received and her experience within the medical system. Kristen discusses how NMOSD impacts her life, including ongoing symptoms, work-life, and personal rel...