ABCs of NMOSD (Siegel Rare Neuroimmune Association (SRNA))

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 a person is under-insured or uninsured. Finally, the expert provided information on the process of appealing insurance denials, as well as programs to help afford medication costs.

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 monitored. The experts also compared and contrasted NMOSD and MOGAD in children. Finally, they provided information on long-term symptom management, repeated MRIs, and indications of a relapse that would require emergency medical care.

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, her personal identity, and the transition from childhood to being an adult living with this disorder. She touches on her fears and her hopes for the future. Finally, Ireland talks about how she explains NMOSD to others in her life.

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 tests used for NMOSD. The experts compare NMOSD and MOGAD in children, including antibody levels, disease course, and treatment protocol. Finally, the experts provide information on differential diagnoses and prognosis.

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 sclerosis. Dr. Flanagan talks about the history of these disorders and why it is important to differentiate them. Finally, Dr. Flanagan describes how people diagnosed with MOGAD and NMOSD can receive medical care and what they can expect for the future.

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 he discussed the differences between how NMOSD is understood today since Dr. Devic's first understanding of the disease. Dr. Weinshenker talked about how a diagnosis of NMOSD is made, including the clinical makeup and diagnostic tests used. Finally, Dr. Weinshenker explained the acute and long-term treatments used and symptom management for NMOSD.

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 levels. These include breathing tools, visualization, body scanning, and mindfulness-based therapy. Finally, Dr. Rensel and Dr. Sullivan discussed support groups and stress relief for care partners and loved ones of people who are receiving care.

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 for men and women. She discussed considerations for mobility and whether NMOSD may affect fertility. Finally, Dr. Cabahug described physical rehabilitation that can improve sexual dysfunction and how to choose a health care provider to assist with evaluation.

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 can be restored and how these corrections might be applied to treatments and cures for NMOSD and MOGAD. There are visual slides that accompany this episode. The visual presentation can be found at https://youtu.be/PtYzqrNi6pg

Dr. Michael Levy and Dr. Elias Sotirchos join GG deFiebre of SRNA for an ABCs of NMOSD podcast on "Understanding Clinical Trial Results for NMOSD Therapies." The medical experts begin by explaining the steps of a clinical trial and the requirements of FDA approval. They then describe the differences between types of studies and the advantages of each type. Finally, Dr. Levy and Dr. Sotirchos discuss the three new NMOSD drugs and compare the results for each trial.

For this ABCs of NMOSD podcast on "Symptom Management: Bladder Dysfunction," GG deFiebre of SRNA is joined by Dr. Philippines Cabahug. Dr. Cabahug starts off by explaining how bladder function can be affected by NMOSD and the types of problems a person with NMOSD might experience. She discusses treatment options, including medications, catheterization, and Botox injections. She talks about UTIs and methods for avoiding them. Finally, Dr. Cabahug discusses InterStim, the effects of aging on the bladder, and when to establish care with a neurologist.

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 distinguishing NMOSD from other conditions that cause optic neuritis, like multiple sclerosis (MS) and MOG antibody disease (MOGAD), can be challenging. He emphasized the importance of rapid and proper treatment of optic neuritis. Finally, Dr. Shin described how low-vision therapy may help those with significant visual impairment.

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 identities and body perception [00:08:02]. Both emphasized the significance of connecting with others and seeking professional help to navigate these challenges [00:11:25].

00:00 Introduction to ABCs of NMOSD

01:10 Meet the Guests: Heather Sawala and Dr. Megan Beier

03:26 Heather's Diagnosis Journey

05:04 Dr. Beier's Work and Find Empathy

08:02 Discussion on Post-Diagnosis Body Dysmorphia

11:25 Coping Strategies and Personal Experiences

24:57 Advice for Newly Diagnosed Patients

33:18 Final Thoughts and Resources

Heather Sowalla has lived most of her life in Pennsylvania. After earning her bachelor's degree in Environmental Science and her master's degree in Environmental Studies, she returned home to her family's 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.

Meghan Beier, PhD is on faculty at Johns Hopkins and is a Health and Rehabilitation Psychologist specializing in multiple sclerosis at the Rowan Center for Behavioral Medicine. Dr. Beier completed her PhD in Clinical Psychology, Health Emphasis, from Yeshiva University then completed a postdoctoral fellowship, funded by the National MS Society, at the University of Washington where she focused on the rehabilitation, cognition, and mental health of individuals living with MS.

Dr. Beier has been featured in well-known publications such as the New York Times, People Magazine, and Psychology Today. She is an internationally invited keynote speaker and also an active consultant and speaker for organizations such as National MS Society, Can Do Multiple Sclerosis, and more. Dr. Beier’s research interests include neuropsychological outcomes for individuals living with MS; cognitive rehabilitation; and behavioral approaches to wellness. She continues to remain active in research as an adjunct faculty member of Johns Hopkins University School of Medicine.

Dr. Beier’s passion for improving care for people living with challenging medical conditions led her to create Find Empathy, which provides a free directory of mental health providers that specialize in working with medical populations. Find Empathy also provides continuing education for mental health professionals focused on how best to serve those living with or affected by life altering illnesses.

https://www.nationalmssociety.org/

https://cando-ms.org/

https://scholar.google.com/citations?user=KUPu4O4AAAAJ&hl=en

https://findempathy.com/

https://findempathy.com/learn/

GG deFiebre of SRNA is joined by Dr. Margaret Jones for an ABCs of NMOSD podcast on "Symptom Management: Bowel Dysfunction." The podcast begins with Dr. Jones giving a brief overview of the possible effects of NMOSD on bowel function and the different issues someone with NMOSD might experience. She then discusses treatment options and how a treatment plan is decided. Dr. Jones talks about digital stimulation, constipation, and the effects of aging on bowel function.

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 her strategies for maintaining a social life despite her condition [00:22:34]. Kim also offered advice for others dealing with NMOSD on how to stay connected and live their best life [01:19:17].

Kim Jackson-Matthews, a past Continuity Director with KCBS-FM / Jack93.1 radio station, is well known in the rare patient community for being an advocate for Neuromyelitis Optica Spectrum Disorder, NMOSD. Her passion for helping people with rare diseases and those in underrepresented areas along with her personal experience with chronic disease has leveraged her as the Diversity, Equity, Inclusion and Accessibility Liaison with the Guthy-Jackson Charitable Foundation. As a 2nd degree Black Belt in Taekwondo, she is very passionate about health and wellness. For over twenty-five years Kim has been a licensed Personal Fitness Trainer whose focus is to educate and motivate people to, “Just Keep Moving!” Kim has held the office of Co-Chair of the Physical and Mental Health Committee as a member of Delta Sigma Theta Sorority, Inc. Los Angeles Alumnae Chapter and was excited to spread the word about NMOSD during their Self-Care Summit: Seven Days of DeltaCare now on YouTube. Kim has gone to Washington, DC for Rare Disease Week on Capitol Hill with RDLA to speak to state stakeholders. She will continue to use her voice to advocate for those who can’t do so for themselves.

Dr. Kyle Blackburn, Dr. Cynthia Wang, and Dr. Ruchika Prakash joined GG deFiebre of SRNA and Dr. Chelsey Judge of the Connor B. Judge Foundation for an ABCs of NMOSD podcast on "Complementary Therapies and NMOSD." The experts begin by explaining what complementary therapy is and what common approaches are used. They discuss acupuncture, chiropractic procedures, supplements, diet, exercise, and medical marijuana. The experts provide information on functional electrical stimulation, a possible complementary therapy at the acute stage of an inflammatory attack. Finally, the experts discuss how mindfulness can be helpful in overall health.

GG deFiebre of SRNA is joined by Dr. Jacqueline Nicholas for an ABCs of NMOSD podcast on "Symptom Management: Spasticity." Dr. Nicholas begins by explaining spasticity and tone and how it is affected by NMOSD. She discusses the causes of spasticity and why some people experience it while others do not. She describes first-line and second-line treatments for spasticity and how exercise can help. Dr. Nicholas explains how spasticity can affect ligaments, muscles, and bones.

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 ongoing research that is being conducted on COVID-19 and people with NMOSD.

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 relationships. She touches on her fears and her hopes for the future. Finally, Kristen talks about how NMOSD has affected her as a parent.

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 [00:16:02]. 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.

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, and relationships, offering advice to newly diagnosed men [00:17:24]. Finally, they emphasized the importance of support groups and looking towards the future with hope [00:32:28].

Doug Kirby has lived most of his life in Utah. After earning a degree in microbiology from BYU, he went to the University of Washington to gain his master’s degree in environmental health science. Doug also spent two years in South Korea as a church missionary. He has been married to his wife, Holly, for 39 years, and they have 5 kids, all boys but the first four, and eight grandchildren. Doug spent the first ten years of his career in the environmental field working at two different hazardous waste disposal sites and then switched to information technology. During his career, Doug has been a developer and manager. He currently lives in Herriman, Utah where he and Holly are looking forward to retirement in a little over three years. Doug was diagnosed with NMOSD when he was 56 in 2017. His vision is fine, but he has some physical difficulties including numbness and trouble walking that he has learned to live with. Doug enjoys meeting with and learning from others who are going through similar challenges.

Andrew Jopson is a PhD candidate at Johns Hopkins University, researching how Medicaid-funded long-term services and supports (LTSS) influence the care experiences of older adults with disabilities and their caregivers. His research, policy, and advocacy interests are motivated by his experience as a caregiver for his brother. He earned his BA at the University of California, Berkeley and MPH at the University of Washington (UW) in Seattle. Andrew was diagnosed with seronegative NMOSD, lupus, and Graves' Disease in 2022 following an attack and extended hospitalization. He is an aviation enthusiast who enjoys swimming, making people laugh, and reminding everyone that his chocolate chip cookies were awarded second place in the 2019 Washington State Fair.

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 also talked about the timing of relapses and when to consider switching therapies.

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 strategies for navigating costs and medical insurance. Dr. Abboud outlined each FDA-approved and off-label treatment for relapse prevention and maintenance, possible risks and side effects, potential differences in insurance coverage, and a clinical pharmacist’s role in the selection process. Finally, Dr. Abboud described considerations for a woman who's considering family planning and how to set up co-treatment with an academic or neuroimmunology center.

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 factors to consider when someone is considering which long-term treatment to use, including antibody testing, approval from medical insurance, and relapse occurrence.

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 should know about receiving one. He talks about the protocol for relapses that occur during the pandemic and the first line treatments that are used after an attack. Finally, he provides information on whether COVID-19 infection and COVID-19 vaccines have caused relapses or new cases of NMOSD, and he reveals the research that is currently being conducted on this subject.

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 approach certain scenarios. The experts also outlined the benefits and risks of several medications and options for treatment scheduling, symptom management, and MRI preparation. Finally, they described considerations for labor and breastfeeding.

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 discussed what someone can expect if they choose to participate in this trial, how participation would impact someone’s current treatment, and the timeline of this trial. Additional information is available here:

https://wearesrna.org/clinical-studies-and-trials/study-of-inebilizumab-in-pediatric-subjects-with-neuromyelitis-optica-spectrum-disorder/ 

https://clinicaltrials.gov/study/NCT05549258?term=NCT05549258&aggFilters=status:not%20rec&rank=1

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 podcast begins with an overview of the most common treatments of neuromyelitis optica spectrum disorder (NMOSD) and their side effects. The experts discuss the three new treatments that have been recently developed, and they discuss the differences between each treatment. They talk about factors to consider when choosing a treatment option, reasons why a person might switch treatments, and insurance implications. Finally, the experts discuss pediatric considerations for treatment, how to find research studies and trials, and supplementary treatments for NMOSD in addition to medication.  

ABCs of NMOSD podcast series is hosted by the Siegel Rare Neuroimmune Association, in collaboration with The Sumaira Foundation for NMO, The Connor B. Judge Foundation, and The Guthy Jackson Charitable Foundation.  

ABCs of NMOSD is made possible through a patient education grant from Viela Bio.

SRNA was joined by Katherine Chapman, LCSW, CRND for this ABCs of NMOSD podcast on "Psychosocial Aspects of NMOSD: Anxiety, Depression, and How to Cope." She begins by explaining the ways in which NMOSD can affect mental health and cause anxiety and depression. She describes different coping mechanisms and strategies for improving mental health. Katherine provides information on therapy and how to choose a mental health professional. Finally, she describes methods of asking for help and communicating with friends and family about mental health struggles.

Dr. Michael Levy, an expert in rare neuroimmune disorders, gives a presentation entitled "I have NMOSD. Now what?", the first podcast in a ten-part series called ABC's of NMOSD. Dr. Levy defines neuromyelitis optica spectrum disorder (NMOSD) and explains the history of the disease. He discusses potential causes and diagnostic criteria. Finally, Dr. Levy discusses acute treatments, short-term expectations after diagnosis, and preventative treatments.

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 adult populations [00:05:54]. The discussion also explored the transition process, including timelines, support systems, and considerations for patients and families, aiming to ensure a smooth shift in care [00:10:45].

Dr. Galli received his medical degree from the University of Vermont College of Medicine in Burlington, VT, and completed his neurology residency at The University of Utah in Salt Lake City, UT, where he worked with Fellowship mentor, Dr. Clardy. As part of his fellowship training, he conducted research to look for biomarkers in individuals with NMOSD. The research investigated whether individuals have aquaporin¬-4 (AQP¬4) autoantibodies prior to their symptom onset of NMOSD, and also looked for other inflammatory biomarkers. He hopes the study will help us to understand how biomarkers occur over the course of the disorder, which will hopefully help identify predictors of disease development, and ultimately therapeutic targets.

For this ABCs of NMOSD podcast, Chelsey Judge, PhD, from the Connor B. Judge Foundation and Sumaira Ahmed from The Sumaira Foundation for NMO help explain NMOSD through their personal experiences. Chelsey tells the story of her brother, Connor's diagnosis and the continuing symptoms he still has, such as fatigue and pain. Sumaira recounts her own diagnosis story and the symptoms she also experiences, including visual issues, bladder dysfunction, and fatigue. Chelsey and Sumaira then discuss how they explain NMOSD to others, including the disease mechanism and ongoing symptoms. Finally, they talk about hope for the future and promising research developments for NMOSD.

Dr. Sean J. Pittock and Dr. Dean M. Wingerchuk join us for an ABCs of NMOSD podcast titled "Am I Having a Relapse?" The experts begin by defining relapses and pseudo relapses, and they discuss the potential symptoms and possible triggers. They discuss what someone should do if they think they may be experiencing a relapse and the tests neurologists use to identify a relapse is taking place. Finally, the physicians explain the frequency of relapses, the possibility of permanent nerve damage, and how treatment affects a person's likelihood of relapsing.

Maureen A. Mealy, PhD, joins GG deFiebre of SRNA for an ABCs of NMOSD podcast on "Symptom Management: Pain." Dr. Mealy begins by explaining the different types of pain that can occur with NMOSD. She discusses different treatments for pain and current research into new treatment options. She talks about TENs treatment, Scrambler Therapy, and complimentary treatments. Dr. Mealy discusses pain in relation to a relapse and how to cope with pain long-term.