SRNA Soundwaves

Latest Episodes:

ABCs of NMOSD 106. Symptom Management Mini-Series | Managing Pain in NMOSD Oct 09, 2020

Show notes

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.

ABCs of NMOSD 105. Explaining NMOSD to Others Sep 20, 2020

Show notes

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.

ABCs of NMOSD 104. Understanding Clinical Trial Results for NMO Therapies Aug 20, 2020

Show notes

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.

Ask the Expert 807. Behavioral and Psychological Changes in Demyelinating Conditions Aug 13, 2020

Show notes

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.

ABCs of NMOSD 103. Am I Having a Relapse? Jun 11, 2020

Show notes

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.

Ask the Expert 806. Latest Updates on COVID-19 and Rare Neuroimmune Disorders May 13, 2020

Show notes

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.

Ask the Expert 805. Helping Children and Families Manage and Cope with Stress During COVID-19 Apr 09, 2020

Show notes

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.

ABCs of NMOSD 102. Choosing a Long-Term Treatment Option Apr 02, 2020

Show notes

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 education grant from Viela Bio.

Ask the Expert 804. Neuroimmune System 101 / A primer on how the nervous and immune systems work together Mar 19, 2020

Show notes

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.

ABCs of NMOSD 101. I Have NMOSD. Now What? Feb 24, 2020

Show notes

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.

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