Uploaded January 2024 | Updated September 2026, 2 weeks ago
Carlos Vila Silvan y la Dra. Teresa Gasalla presentaron una conversación con aliados de la industria sobre el apoyo y los recursos, destacando los compromisos y proyectos de investigación de sus respectivas compañías en el área de enfermedades raras, específicamente en trastorno del espectro de neuromielitis óptica (NMOSD) y enfermedad de anticuerpos MOG (MOGAD).
Trastornos Neuroinmunológicos Poco Frecuentes Simposio en Español 2023
Carlos Vila Silvan, MBBS
Teresa Gasalla, MD
Carlos Vila Silvan y la Dra. Teresa Gasalla presentaron una conversación con aliados de la industria sobre el apoyo y los recursos, destacando los compromisos y proyectos de investigación de sus respectivas compañías en el área de enfermedades raras, específicamente en trastorno del espectro de neuromielitis óptica (NMOSD) y enfermedad de anticuerpos MOG (MOGAD).
Trastornos Neuroinmunológicos Poco Frecuentes Simposio en Español 2023
Carlos Vila Silvan, MBBS
Teresa Gasalla, MD

![504. Managing the Dread of Relapse
In this ABCs of NMOSD episode, 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 [00:16:02]. She shared coping strategies and emphasized the importance of a supportive community and the advancements in NMO treatment [00:25:49]. Finally, Heather encouraged those newly diagnosed to seek a doctor they connect with and lean on the community for support [00:34:12].
Heather Sowalla has lived most of her life in Pennsylvania. After earning her Bachelors degree in Environmental Science and her Masters degree in Environmental Studies, she returned home to her families dairy farm where she utilized her degree focusing on sustainable agriculture. Heather also spent two summer seasons working in Alaska with the Fish and Wildlife Department focusing on sustainable fisheries. Heather first became symptomatic for NMOSD around 2004 and has since lost a good deal of her vision, but she is doing well otherwise. Heather is newly engaged to Doug, a fellow NMOSD patient, and they plan on creating a life together in Vintondale, Pennsylvania.
00:00 Introduction to the Episode
01:46 Meet Heather
04:20 Heathers Diagnosis Journey
14:14 Coping with the Fear of Relapse
21:36 Finding Solace and Support
24:04 Support Groups and Stability
24:22 Living with NMO: Overcoming Fear
27:51 The Importance of Preventative Treatments
30:23 Coping Mechanisms and Mental Health
40:19 Building a Strong Medical Team
45:13 Final Thoughts and Advice 504. Managing the Dread of Relapse](https://i.ytimg.com/vi/AUUf1hXH6pk/mqdefault.jpg)

![1311. Understanding Myelitis: Efforts to Update Diagnostic Criteria
In this episode of the SRNA Ask the Expert podcast moderated by Dr. GG deFiebre, Dr. Kyle Blackburn and Dr. Benjamin Greenberg discussed the need for updated diagnostic criteria for myelitis. Dr. Blackburn explained the term myelitis and the importance of precise terminologies for accurate diagnoses and research [00:05:10]. Dr. Greenberg elaborated on the advancements in testing and understanding of associated disorders like NMOSD and MOGAD since 2002 [00:11:10]. Both experts stated that the shift from transverse myelitis to myelitis will aid future research, treatments, and patient care [00:17:27]. They reassured patients that these changes would essentially refine their care but not alter it dramatically [00:23:40]. They encouraged patients to stay informed and communicate with their healthcare providers about these updates [00:28:58].
Kyle Blackburn, MD is an Assistant Professor in the Department of Neurology at UT Southwestern Medical Center in Dallas, Texas. He specializes in neuroimmunology and has clinical interests in antibody-mediated neurologic disorders, including autoimmune encephalitis, epilepsy, and ataxias; neurologic complications of cancers, including paraneoplastic disorders and checkpoint inhibitor/CAR T-cell toxicity; and demyelinating disorders, including sarcoidosis, neuromyelitis optica, myelin oligodendrocyte glycoprotein (MOG)-associated disease, and multiple sclerosis.
Dr. Blackburn earned his medical degree at the University of Kentucky College of Medicine. He performed his residency in adult neurology at UT Southwestern, serving his final year as Chief Resident, and stayed to complete a fellowship in neuroimmunology, during which he earned the James T. Lubin Clinician Scientist Award from the Siegel Rare Neuroimmune Association (SRNA). He joined the UT Southwestern faculty in 2020.
Benjamin M. Greenberg, M.D., M.H.S. is a Professor and the Cain Denius Scholar in Mobility Disorders in the Department of Neurology at UT Southwestern Medical Center in Dallas, Texas. He currently serves as the Vice Chair of Translational Research and Strategic Initiatives for the Department of Neurology. He is also the interim Director of the Multiple Sclerosis Center and the Director of the Neurosciences Clinical Research Center. In addition, he serves as Director of the Transverse Myelitis and Neuromyelitis Optica Program and the Pediatric Demyelinating Disease Program at Children’s Medical Center.
Dr. Greenberg earned his medical degree at Baylor College of Medicine before completing an internal medicine internship at Chicago’s Rush Presbyterian-St. Luke’s Medical Center. He performed his neurology residency at the Johns Hopkins School of Medicine. He also holds an M.H.S. in molecular microbiology and immunology from the Bloomberg School of Public Health, as well as a bachelor’s degree in the history of medicine – both from Johns Hopkins. Prior to his recruitment to UT Southwestern in 2009, Dr. Greenberg was on the faculty of the Johns Hopkins Division of Neuroimmunology, serving as the Director of the Encephalitis Center and Co-Director of the nation’s first dedicated Transverse Myelitis Center.
Dr. Greenberg splits his clinical time between adult and pediatric patients at William P. Clements Jr. and Zale Lipshy University Hospitals, Parkland, and Children’s Medical Center. His research focuses on better diagnosing, prognosticating, and treating demyelinating diseases and nervous system infections. He also coordinates clinical trials to evaluate new treatments to prevent neurologic damage and restore function to affected patients.
00:00 Introduction
00:58 Overview of Myelitis and Diagnostic Criteria
02:57 Historical Context and Importance of Updated Criteria
05:10 Challenges with Current Terminology
11:10 Changes in Understanding and Diagnostic Approaches
17:27 Implications for Patients and Clinical Practice
23:40 Impact on Research and Future Directions
28:58 Patient Advocacy and Resources
31:17 Conclusion and Final Thoughts 1311. Understanding Myelitis: Efforts to Update Diagnostic Criteria](https://i.ytimg.com/vi/AisPcfLkAz8/mqdefault.jpg)

![Ask the Expert 1401. Open Q&A on Neuromyelitis Optica Spectrum Disorder (NMOSD)
In SRNA’s Ask the Expert episode moderated by Krissy Dilger, Dr. Elena Grebenciucova described neuromyelitis optica spectrum disorder (NMOSD) symptoms including optic neuritis, transverse myelitis, brainstem syndromes, and intractable hiccups [00:01:05]. She outlined diagnostic evaluation using MRI and correct blood-based antibody testing (preferably cell-based assays), common diagnostic pitfalls, and the need to rule out infections before immunosuppressive treatment [07:08]. Dr. Grebenciucova reviewed urgent relapse management with IV steroids and early plasma exchange, side effects, long-term preventive therapies (FDA-approved and off-label) [14:02]. Finally, she answered community questions on supplements, chronic optic neuritis, rehab appeals, pain/spasticity, pregnancy planning, long-term treatment duration, mental health, seronegative syndromes, follow-up frequency, and recovery expectations [25:22].
Elena Grebenciucova, MD completed neurology residency at the University of Chicago in Chicago, Illinois. Dr. Grebenciucova has been interested in autoimmune disorders of the central nervous system, including rare neuroimmune disorders, since medical school. After residency, she completed a neuroimmunology Fellowship under the mentorship of Dr. Brenda Banwell and Joseph Berger at the Perelman School of Medicine of The University of Pennsylvania. Currently she is an assistant professor of Neurology (MS/Neuroimmunology) and neurological infections at Northwestern University in Chicago, Illinois, and she runs the Transverse Myelitis Center there. Dr Grebenciucova sees patients with rare autoimmune conditions including NMOSD, MOGAD, transverse myelitis, and autoimmune encephalitis.
00:00 Welcome and Introduction
01:05 What Is NMOSD?
01:59 Symptoms and Relapse Signs
03:27 What Causes NMOSD?
07:08 How NMOSD Is Diagnosed
10:09 Key Tests and Pitfalls
14:02 Acute Attack Treatment
17:18 Steroid Side Effects
22:19 Long-Term Therapies Worldwide
25:22 Community Questions, Beginning with Vitamins
27:40 Optic Neuritis Breakthroughs
28:47 Chronic Optic Nerve Inflammation
29:19 Winning Insurance Appeals
31:23 Waist Band Pain and Spasticity
34:04 Pregnancy and Family Planning
37:40 Stopping Long-Term Treatment
39:40 Long-Term Side Effects
43:04 Mood and Personality Changes
49:47 Trials for Seronegative NMOSD
52:55 Follow Up Visit Schedule
55:34 Relapse Recovery Timeline
58:02 Closing Ask the Expert 1401. Open Q&A on Neuromyelitis Optica Spectrum Disorder (NMOSD)](https://i.ytimg.com/vi/BrGUWR9fefM/mqdefault.jpg)




