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Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric Disorders

Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric Disorders

Auteur(s): Susan Newman Manfull PhD
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Hello and welcome to Untangling PANDAS & PANS, a podcast about two relatively unknown medical disorders characterized by the sudden and dramatic onset of obsessions and compulsions, vocal or motor tics, or restricted eating behavior -- and a whole host of other symptoms -- following strep or other bacterial or viral infection. Sometimes overnight. I have the privilege of interviewing some of the top researchers and clinicians in the rapidly growing field of Infection-Associated, Immune-Mediated Neuropsychiatric Disorders. That’s a mouthful of words that encompasses the strangely named disorders, PANDAS and PANS.

My name is Dr. Susan Manfull. I am a social psychologist, the Executive Director of The Alex Manfull Fund, and the mother of Alex Manfull, who died at 26 years old due to PANDAS, a neuropsychiatric disorder my husband and I knew next to nothing about, certainly not that our daughter could die from it.

PANDAS is an acronym for “Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus.” This disorder, first defined in 1998 at the National Institute of Mental Health, describes the acute and dramatic onset of obsessions and compulsions and/or motor or vocal tics as well as a whole host of neuropsychiatric symptoms in temporal association to a Group A streptococcal infection. PANS, which stands for Pediatric Acute-onset Neuropsychiatric Syndrome, refers to a similar symptom presentation -- with obsessions and compulsions or restricted eating being the cardinal symptoms -- due to a broader category of triggers (typically bacterial or viral infections). Both are thought to stem from a dysregulated immune system, probably leading to an over-production of autoantibodies and concomitant excess brain inflammation, particularly in the basal ganglia.

Symptoms vary from person to person and range in severity from mild to severe, and generally have a relapsing and remitting course. With early recognition and correct treatment, these disorders can be successfully treated. Today, it is no longer viewed as a diagnosis limited to the pediatric population.

Please stay tuned after each episode to listen to a one-minute public service announcement about PANDAS & PANS and The Alex Manfull Fund. To learn more, please visit our website: TheAlexManfullFund.org.

This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.

© 2025 Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric Disorders
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Épisodes
  • S2 E15 Science Under Siege: A conversation with Dr. Uğur Akcan and Dr. Dritan Agalliu about PANDAS Research, NIH Cuts, and the Power of Community
    Jun 30 2025

    How does a common strep infection become a brain disorder? Dr. Uğur Akcan's journey from Istanbul to the cutting edge of PANDAS research with Dr. Dritan Agalliu reveals the fascinating intersection of immune system and brain function that could transform how we understand and treat neuropsychiatric disorders.

    In this captivating conversation, Dr. Akcan shares his research path from studying complement levels in patients with bipolar disorder to pioneering work on the blood-brain barrier, ultimately contributing to groundbreaking discoveries about PANDAS and PANS in the Agalliu Lab at Columbia University. With remarkable clarity, he explains how mutations in the RxRA gene may explain why only some children develop these disorders after streptococcal infections, and how microglia—the brain's immune cells—fail to properly regulate neuroinflammation when this gene is compromised.

    The discussion takes an unexpected turn as we learn how Dr. Akcan's vital research was nearly derailed in March 2025 by sudden NIH funding cuts directed by the Trump administration at Columbia. In a dramatic development, the PANDAS/PANS community rallied to save his position through a GoFundMe campaign, demonstrating the powerful connection between affected families and researchers working to solve this medical mystery.

    Beyond the scientific discoveries, Dr. Akcan's personal story reflects the qualities that drive medical breakthroughs: curiosity about why peripheral infections trigger brain symptoms, perseverance through research challenges, and passion for helping those affected by these devastating disorders. His development of a 3D blood-brain barrier model and investigations into Th17 cells represent frontier science with real-world implications for treatment.

    When Dr. Akcan is not in the lab, you may find him watching football, rooting for his favorite team, Galatasaray, or spending time with his wife and young child.

    Dr. Agalliu also joins me to discuss how the NIH funding cuts have affected his lab.


    Support Dr. Akcan's crucial PANDAS/PANS research by visiting this GoFundMe page and join the community working to unravel PANDAS and PANS. Your contribution could help transform our understanding of how infections trigger neuropsychiatric symptoms and lead to better treatments for children, adolescents, and young adults suffering from these disorders. Both researchers express deep gratitude to supporters of this work.

    The goal is to raise $100,000 to cover Dr Akcan's annual salary and benefits -- only $15, 602 left!

    Disclaimer: The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the views or positions of any entities they represent.

    Credits: Music by Kingsley Durant from his "Convertible" album

    To learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.org

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    1 h et 34 min
  • S2 E14: When Everything Changes: Jen's Journey with PANS/PANDAS and the Fight to Be Believed
    Jun 1 2025

    In this powerful episode of Untangling PANDAS and PANS, host Susan Manfull, PhD sits down with Jen, a resilient young woman whose health took a devastating and mysterious turn in her early twenties. From being taken out of work on a stretcher—twice—to struggling for answers amidst an array of debilitating physical and psychiatric symptoms, Jen shares a deeply personal account of navigating a fragmented medical system while battling PANS/PANDAS and related autoimmune conditions.

    Jen recounts her long history of strep infections, early signs of neurological distress, misdiagnoses, and the profound impact of being dismissed by the medical community. She opens up about the moment she was finally heard, the diagnosis that changed everything, and her journey toward recovery with IVIG treatment. Now in graduate school and reclaiming her life, Jen offers hope, insight, and advice to others walking a similar path.

    Disclaimer: The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the views or positions of any entities they represent.

    Credits: Music by Kingsley Durant from his "Convertible" album

    To learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.org

    Follow us on:
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    Instagram
    LinkedIn

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    58 min
  • S2 E13: Understanding the Role of a Psychologist in PANDAS and PANS: A Conversation with Dr. Sarah O'Dor
    Apr 27 2025

    In this illuminating conversation, Dr. Sarah O'Dor—Harvard instructor and Director of Research at Massachusetts General Hospital's PANDAS Clinic—reveals how strep infections and other triggers can cause sudden, dramatic psychiatric symptoms in children and young adults.

    Dr. O'Dor paints a vivid picture of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), conditions where infections trigger obsessive-compulsive behaviors, tics, restricted eating, and a host of other psychiatric, cognitive, emotional, somatic, and medical symptoms. Through the compelling case of "Ms. K," a six-year-old who developed severe handwashing compulsions following a strep infection, Dr. O'Dor demonstrates how these conditions often go misdiagnosed as traditional psychiatric disorders.

    The conversation explores the critical role psychologists can play in recognizing these disorders and providing effective treatment. Dr. O'Dor describes how cognitive-behavioral therapy can be adapted for these patients, how families are affected by sudden behavioral changes in their children, and how psychologists can support not just the child but the entire family system. Also very importantly, she emphasizes the need for collaboration between mental health professionals and medical specialists—a multidisciplinary approach reflecting the complex nature of these disorders.

    For parents, clinicians, and anyone interested in the fascinating intersection between immunology and mental health, this episode offers a roadmap to better understanding, earlier diagnosis, and more effective treatment. The discussion culminates with reflections on a growing paradigm shift in psychiatry—one that increasingly recognizes the role immune function plays in mental health.

    Whether you're a healthcare provider, a parent concerned about your child's sudden behavioral changes, or simply curious about emerging understandings of brain-immune connections, this episode will transform how you think about certain psychiatric symptoms.

    To read the article reference in the podcast, click here.

    Disclaimer: The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the views or positions of any entities they represent.

    Credits: Music by Kingsley Durant from his "Convertible" album

    To learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.org

    Follow us on:
    Facebook
    Instagram
    LinkedIn

    Voir plus Voir moins
    1 h et 15 min

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