18 episodes

Neuromyelitis Optica Spectrum Disorder (NMOSD) is a neurological autoimmune disease that causes blindness and paralysis. While NMOSD is a rare disease, autoimmune diseases are common, and so is finding scientific and medical jargon tricky to understand. In this podcast, The Sumaira Foundation and Connor B J Foundation work to simplify the science associated with NMOSD and related neuro-immune disorders, bringing together patients and experts.

Demystifying NMO The Sumaira Foundation and Connor B Judge Foundation

    • Health & Fitness
    • 5.0 • 18 Ratings

Neuromyelitis Optica Spectrum Disorder (NMOSD) is a neurological autoimmune disease that causes blindness and paralysis. While NMOSD is a rare disease, autoimmune diseases are common, and so is finding scientific and medical jargon tricky to understand. In this podcast, The Sumaira Foundation and Connor B J Foundation work to simplify the science associated with NMOSD and related neuro-immune disorders, bringing together patients and experts.

    Illuminating the Darkness of Pediatric NMOSD Through Storytelling - Meet Nell Choi'

    Illuminating the Darkness of Pediatric NMOSD Through Storytelling - Meet Nell Choi'

    In the season finale of season 2, Chelsey reviews the topics covered and seeks feedback from listeners for season 3!To top off season 2, Demystifying NMO features Nell Choi, who shares her powerful and inspiring NMO story and optimistic perspective. Nell is a 13 year old accomplished NMOSD patient advocate. She is a published author of 'My Hospital Story', aiming to foster connection with others going through similar traumatic health journeys. She has also brought national awareness of NMO by appearing on CBS evening news to share her story. Recently, she met with President Joe Biden and First Lady Jill Biden, presenting them with a copy of her book.In a candid chat with Chelsey, Nell shares:At 9 years old, Nell faced the mysterious and confusing onset of NMO, hospitals and the overall healthcare system. Of note, pediatric cases makes up about 3-5% of NMOSD.Nell coped through journaling and finding gratitude for her parents and the gifts she would find through her journey, including finding connection in the NMO community, as well as herself and core values through the adversity.Her authorship of 'My Hospital Story' taught her the importance of connection with others, and that we all have the power to make an impact.Nell's hopes for the future of the NMO community include finding a cure and making sure all impacted by NMO are able to share their story to become more connected.To learn more about pediatric NMO, here is a scientific journal mentioned in this episode: https://www.frontiersin.org/articles/10.3389/fped.2020.00339/full

    • 17 min
    NMOSD Diagnosis Part 2: Control What You Can

    NMOSD Diagnosis Part 2: Control What You Can

    Part 2 of our conversation on the NMOSD diagnosis, we discuss the personal 'what now?' element...On the individual level, what does coping and living with a newly obtained NMOSD diagnosis look like? What can you do about it? To answer these questions, Demystifying NMO is delighted to have guest Taylor Ann Macey on the pod to discuss her personal patient experience with her NMOSD diagnosis. Taylor is a wife, mother, Brigham Young University graduate and life coach, with an educational background in fitness and nutrition, Taylor is candid about her NMOSD diagnosis story:What her journey to the NMOSD diagnosis looked likeHow she coped with her new life post NMOSD diagnosisControlling what you can by implementing an integrative approach to NMOSD:Building a trusted clinical care team that incorporates acute relapse management with preventative treatment based on shared decisionsMovement! Being mindful and respectful of your body's capabilities and limits, while moving/exercising as you can to show your body love and improve outcomeGood, well-balanced nutritionFocusing on your mental and emotional health! Going inward to process difficult life events like an NMOSD diagnosis is critical, and finding a trusted therapist can be impactful and helpful. Approaches to identifying all the misinformation on the internet!

    • 24 min
    NMOSD Diagnosis: Patient and Clinical Perspective

    NMOSD Diagnosis: Patient and Clinical Perspective

    In this episode, host Chelsey chats with NMOSD patient and pediatric hematologist Dr. Joanna Robles about her unique perspective and experience obtaining her NMOSD diagnosis. In their discussion, they review:Important considerations for clinicians who make the NMOSD diagnosis and provide carOverview of the educational and training pathway for clinicians, including neurologistsReview of the International Diagnostic Criteria for NMOSD: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4515040/Highlight the importance of a swift and accurate NMOSD diagnosis for appropriate treatment and managementStay turned for a follow-up part 2 episode, in which Chelsey will chat with another NMOSD patient on 'After the NMOSD Diagnosis: Controlling What You Can.'

    • 29 min
    Get Nerdy: The Latest in NMOSD Research

    Get Nerdy: The Latest in NMOSD Research

    Embrace your inner nerd with host and CBJF scientific advisor Chelsey (PhD immunologist) as she reviews the emerging science and hot topics recently shared at the virtual European Committee for the Treatment and Research in MS (ECTRIMS). This is a major scientific meeting where clinicians and scientists in the field of central nervous system (CNS) diseases/disorders meet to share their recent data and findings with each other. Chelsey breaks down 4 buckets of NMOSD-related research topics:NMOSD- and MOG-associated disorders: overlaps and distinctionsUnraveling complexities of NMOSDData updates on currently FDA-approved NMOSD treatmentsNeurodegeneration and demyelination in the CNS: Potential treatment targets in neuroregenerative processes

    • 14 min
    Too Hot to Handle

    Too Hot to Handle

    Feeling the heat this summer?! People living with NMOSD/MS can experience sensitivity to temperature, particularly extremely hot or cold temperatures. In this episode, Chelsey chats with TSF ambassadors Julie Aldridge and Alexis (aka Lexi) Marta about their experiences living with NMOSD and managing temperature sensitivity. They cover:Impact of heat on NMOSD symptoms aka Uhtoff's phenomenonHeat-related symptoms vs relapseManaging heat, especially on a hot summer dayWhere to find at-no-cost cooling vestsImpact of cold on symptoms and how to manage

    • 20 min
    Dude with NMO

    Dude with NMO

    In this episode, we focus on a rare population: men with NMO! NMO overwhelming affects women compared to men, and we wanted to tap into the male outlook and experiences living with NMO. Host Chelsey is joined by her brother, Connor Judge, a 28 year old man living with NMO to share his male perspectives:What’s it like to be in a sea of women?How does NMO and treatments impact identity?What are the differences between the societal image of being a man vs being a man with NMO?Adapting to work and earning income before and after NMO?What's it like to date and talk about NMO to potential partners?How do you manage relationships with friends and family?

    • 16 min

Customer Reviews

5.0 out of 5
18 Ratings

18 Ratings

Austin310 ,

Excellent and relevant content!

Great conversations and verified information that’s helpful for the NMOSD community!!

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