9 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

    • Medicine
    • 5.0, 10 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.

    Can't Stop; Won't Stop!

    Can't Stop; Won't Stop!

    In the season finale of season 1, Chelsey chats with Sumaira Ahmed of The Sumaira Foundation (TSF) for NMO for a recap on Demystifying NMO. Sumaira shares her insights as both an NMO patient, TSF founder and community leader. Chelsey and Sumaira rehash the episodes and provide their take-aways. They review the goals of the podcast, what they learned throughout the season, their favorite moments, optimism for the NMO community and what's to come.

    • 23 min
    What a Pain in my NMO!

    What a Pain in my NMO!

    In this episode, host Chelsey talks all things related to NMO pain with Dr. Shamik Bhattacharyya, a neurologist at Brigham and Women's Hospital and assistant professor of neurology at Harvard Medical School. Chelsey learns that pain is very prevalent in NMOSD, and presents itself in many ways. They chat a bit about the science of NMO-related pain, exploring how and why it's different than pain related to multiple sclerosis. Although there is no 'magic bullet' to wipe out NMO-pain, Dr. Bhattacharyya talks through the number of ways to manage chronic pain including lifestyle changes, medications, devices and complementary treatments. Dr. Bhattacharyya also answers questions on opiates (not to be used as backbone of pain management and used sparingly!), medical cannabis, cryotherapy and mindfulness. Lots to learn!

    • 33 min
    Episode 7: Navigating the Insurance Labyrinth, with COVID19 in Mind

    Episode 7: Navigating the Insurance Labyrinth, with COVID19 in Mind

    In this episode, Chelsey chats with Marissa Shackleton, Executive Director at the Elliot Lewis Center in Massachusetts. Marissa has 8 years of experience working with patients with NMO and multiple sclerosis and is active with the National MS Society and National Infusion Center Association. She’s a national speaker on access, reimbursement, infusion centers and practice management, and is passionate about patient care and access to affordable treatment. Marissa provides insight on insurance- What’s a deductible? What’s a premium? Any tips to choosing an insurance plan? What’s the difference between Medicaid and Medicare? What are some best practices to managing insurance and making sure treatment is approved? What financial options are available for treatment?In light of the COVID19 pandemic, Marissa also provides specific information regarding navigating healthcare and patient access in the era of this new virus, including insights on relevant aspects of the new legislation passed by Congress in response to the pandemic, the Families First Coronavirus Response Act.

    • 24 min
    Episode 6: Docs' Perspective on NMO, Postpartum

    Episode 6: Docs' Perspective on NMO, Postpartum

    Chelsey again speaks with Dr. Kaplan and Dr. Galetta, both practicing neurologists at Brigham and Women's Hospital and associated with Harvard Medical School. On this episode, they focus their discussion on postpartum considerations in NMOSD patients. They chat about topics that women living with NMO may experience immediately following giving birth. Questions covered: What do I need to know about breastfeeding? What do we know about treatment safety with breastfeeding? What about managing NMO symptoms postpartum? Postpartum depression? Who can provide support and help? Is NMO heritable?

    • 14 min
    Episode 5: What to Expect When You're Expecting with NMO

    Episode 5: What to Expect When You're Expecting with NMO

    On this episode, Chelsey follows up on the topic of sex and NMO and gets into a discussion on pregnancy with NMO. Chelsey explores this topic with Tamara Kaplan, MD and Kristin Galetta, MD, both practicing at Brigham and Women's Hospital and associated with Harvard Medical School. They discuss managing NMO treatments with pregnancy, how to treat a relapse while pregnant, potential safety concerns and more. Both Dr. Kaplan and Dr. Galetta emphasize that a successful pregnancy is possible while managing NMO, but it's crucial to have a planned approach with a trusted clinician. Listen for an in-depth talk that aims to inform about many key questions on NMO and pregnancy.

    • 20 min
    Episode 4: Let's Talk About Sex, Baby

    Episode 4: Let's Talk About Sex, Baby

    Sexual dysfunction is a common invisible symptom in NMOSD, but given the intimate nature of the topic, it's not discussed as much as it should. What exactly is sexual dysfunction? What causes it? What can be done about it? Hear the answers in a discussion between Chelsey and Dr. Tamara Kaplan, a neurologist at Brigham and Women's Hospital and assistant professor in neurology at Harvard Medical School. Dr. Kaplan shares her expertise in treating NMOSD and MS patients, including managing sexual dysfunction.

    • 22 min

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10 Ratings

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