ABCs of NMOSD Podcast Por Siegel Rare Neuroimmune Association (SRNA) arte de portada

ABCs of NMOSD

ABCs of NMOSD

De: Siegel Rare Neuroimmune Association (SRNA)
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ABCs of NMOSD brings together the latest information and research about all things NMOSD, from diagnosis and treatment to quality of life and what it’s like to live with NMOSD. We invite medical experts and researchers, to share the latest up-to-date research and clinical knowledge. We have conversations with individuals who have been diagnosed with NMOSD, their caregivers, and allied health professionals. We give tips on how to advocate at school and at work, where to find help and support, navigate health insurance, and work with a team of medical experts.517154 Enfermedades Físicas Higiene y Vida Saludable
Episodios
  • Jan. 5, 2026, this series is moving to the “SRNA Soundwaves” channel (previously "Ask the Expert")
    Dec 5 2025

    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 streaming platforms.


    What this means for you: If you are already subscribed to our "Ask the Expert" series, you will automatically be subscribed to "SRNA Soundwaves" once the merge happens on January 5th. If you are subscribed to "ABCs of MOGAD, ABCs of NMOSD, ADEM Academy, or Community Meets Clinic," make sure to subscribe to "Ask the Expert," which will be renamed “SRNA Soundwaves” on January 5th, to continue to get new episodes in your feed. You can subscribe here: https://creators.spotify.com/pod/profile/srna-ask-the-expert/


    We hope this change helps our community navigate our educational content more easily and enjoy a smoother, more organized podcast experience. If you have questions about the upcoming change, please email: podcast@wearesrna.org

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    1 m
  • 602. NMOSD and Romantic Relationships
    Oct 13 2025

    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 understanding and patience in relationships [00:09:37]. Finally, they provided advice on dating with a chronic illness and the significance of self-love and finding a supportive partner [00:35:06].


    Johnney (Doug) Newby lived most of his life in Colorado, only moving recently to Pennsylvania in the last year. Doug has a background in criminal justice and worked as a security guard the last few years in Colorado. Doug became symptomatic more than ten years ago with neuromyelitis optica spectrum disorder (NMOSD) spending many weeks in and out of hospitals with transverse myelitis (TM) and optic neuritis (ON). Doug is newly married to Heather ,who is also an NMO patient, and they’re making a life together in Pennsylvania along with their dog, Bailey and their cats.


    Heather Dawn Newby 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 neuromyelitis optica spectrum disorder (NMOSD) around 2004 and has since lost a good deal of her vision, but she is doing well otherwise. Heather is newly married to Doug, a fellow NMOSD patient, and they are creating a life together in Pennsylvania along with their dog, Bailey and their cats.


    Caitlyn Flickinger is a care partner to Landy Thomas, her fiancée, who has NMOSD. Starting college at only 14 years of age, Caitlyn is pursuing her bachelor's degree in political science, with minors in sociology and business. A prolific writer, Caitlyn spends most of her free time writing sci-fi books and letters to her soon-to-be wife, dreaming of one day breaking into the industry and getting her work published and in the hands of readers. Caitlyn also serves as president of the UCF student club she and Landy helped establish, called Epoch: A Minecraft SMP.


    00:00 Introduction and Guest Bios

    02:27 Meet Doug and Heather Newbie

    06:22 Meet Landy Thomas and Caitlyn Flickinger

    09:37 Doug and Heather's Love Story

    14:46 Landy and Caitlyn's Love Story

    20:00 Living with NMOSD

    25:50 Navigating Relationships with NMOSD

    26:38 Commitment and Understanding

    29:47 Challenges and Support

    35:06 Dating Inside and Outside of the Community

    47:00 Advice for NMOSD Patients on Dating

    55:17 Final Thoughts and Encouragement

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    59 m
  • 601. Body Dysmorphia
    Feb 10 2025

    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/

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    37 m
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