Tma Ask The Expert Podcast Series

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.

SRNA partnered with The MOG Project to host this Ask the Expert podcast on "MOG Antibody Disease: Adult and Pediatric Presentations" with Dr. Leslie Benson and Dr. Michael Levy. The experts begin by defining MOG antibody disease and describing the different presentations for adult and pediatric individuals. They discuss the long-term effects and management of the disease. Finally, Dr. Benson and Dr. Levy provide the acute and preventative treatments for MOGAD.

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.

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.

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.

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.

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. 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.

SRNA is joined by Dr. Cynthia Wang and Dr. Lana Harder for an Ask the Expert podcast on "Behavioral and Psychological Changes in Demyelinating Conditions." The experts begin by discussing various psychological effects that people diagnosed with rare neuroimmune disorders may experience, including PTSD, anxiety, stress, and depression. They also talk about behavioral changes that may occur, such as mood swings, changes in personality, and fatigue. Psychological and behavioral challenges of pediatric patients are discussed, as well as possible treatment and coping strategies. Finally, the experts discuss ways in which physicians and medical experts can be educated in regard to these issues for their patients who are diagnosed with rare neuroimmune disorders.

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.

SRNA is joined by Dr. Benjamin Greenberg and Dr. Michael Levy for an Ask the Expert podcast: "Latest Updates on COVID-19 and Rare Neuroimmune Disorders." The experts begin by discussing risk factors for individuals diagnosed with rare neuroimmune disorders contracting COVID-19 and having severe cases of COVID-19 if infected. Treatment and potential vaccination options are discussed, as well as the possible effect of immunosuppressant medication on individuals diagnosed with COVID-19. The experts explain cytokine storms, inflammatory issues such as Kawasaki's, and the possibility of neurological deficits after contracting COVID-19. Finally, the experts discuss the impact of COVID-19 on research, including research into the effects of COVID-19 on individuals with rare neuroimmune disorders as well as unrelated ongoing research studies.

SRNA is joined by Ana M. Hernandez, MS, CBIS and Lana Harder, PhD, ABPP for an Ask the Expert podcast on "Helping Children and Families Manage and Cope with Stress During COVID-19." The podcast begins with the experts giving stress management techniques for adults and children experiencing stress due to the COVID-19 pandemic. The experts discuss homeschooling and parenting, how to manage family dynamics, and ways to practice self-care.

Drs. Benjamin Greenberg, Brian G. Weinshenker, and Stacey Clardy join the second episode of ABCs of NMOSD, titled, "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 educatio

SRNA is joined by Dr. Kyle Blackburn and Dr. Cynthia Wang for a podcast on "Neuroimmune System 101: A primer on how the nervous and immune systems work together." The podcast begins with an overview of the nervous and immune systems and how they relate in the context of rare neuroimmune disorders. The experts discuss COVID-19 (coronavirus) in relation to the immune systems of people with rare neuroimmune disorders. They then answer questions on different ways in which the immune system is activated and how different triggers for the immune system may affect someone with an existing rare neuroimmune disorder. Finally, the experts, who are both former James T. Lubin Fellows, share their research and describe how to participate.

Dr. Michael Levy, an expert in rare neuroimmune disorders, gives a presentation titled, "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.

SRNA is joined by Dr. Michael Bradshaw and Dr. Rohini Samudralwar for a podcast on "What is neurosarcoidosis?" The experts discuss the symptoms, diagnostic criteria, and potential causes of neurosarcoidosis. They talk about the relationship between neurosarcoidosis and the other rare neuroimmune disorders, as well as predispositions for the disorder. Acute treatments, long-term symptoms, and prognosis are discussed. Finally, the experts respond to several questions from the SRNA community.

Dr. Olwen Murphy and Dr. Ram Narayan join SRNA for a podcast on "Newly Diagnosed with a Rare Neuroimmune Disorder: What You Need to Know." The experts begin by discussing early symptoms of a rare neuroimmune disorder and what kind of medical care a person should seek if they are experiencing these symptoms. The experts then describe the process of diagnosing these disorders and what tests should be conducted. Acute treatments, rehabilitation, and next steps are discussed. The experts discuss prognosis and what should be done if a person feels they are experiencing a relapse.

SRNA is joined by Dr. Philippines Cabahug and Dr. Jacqueline A. Nicholas for a podcast on "Everything You Need to Know About Spasticity and How It's Treated.” The experts define spasticity and tone, and they discuss the causes of spasticity. Treatment options are discussed, as well as differences between individual treatment goals. The experts describe the benefit of spasticity and the timeline for when spasticity may appear after diagnosis.

SRNA is joined by Dr. Amanda Henderson and Dr. Elias Sotirchos for a podcast on "Optic Neuritis: When is just ON and when does it mean more?" The medical experts begin by explaining what optic neuritis is, the symptoms, and how it is diagnosed. Treatments, both acute and ongoing, are discussed, as well as circumstances surrounding relapses. The medical experts then discuss ON in the context of other diagnoses such as neuromyelitis optica spectrum disorder, MOG antibody-associated disease, and multiple sclerosis. Finally, rehabilitation and current research on ON is discussed.

SRNA is joined by medical experts Dr. Carlos Pardo and Dr. Bardia Nourbakhsh for a podcast on Fatigue and Rare Neuroimmune Disorders. The experts begin by describing the different causes and types of fatigue. They then discuss treatment options for people experiencing fatigue, both medicated and natural. How to manage the everyday effects of fatigue - whether it's at work, school, home, etc. - is discussed, and the experts give their perspectives on how to talk to one's healthcare providers about fatigue. Finally, the experts discuss the role research plays in studying fatigue and developing new therapies.