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

  • De : Susan Newman Manfull PhD
  • Podcast
Couverture de Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric Disorders

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

De : Susan Newman Manfull PhD
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  • Résumé

  • 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.
    © 2024 Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric Disorders
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    Épisodes
    • The Intersection of Strep, Intractable OCD, Psoriasis, and IL-17: A Conversation with Kyle Williams, MD, PhD and Andrew

      The Intersection of Strep, Intractable OCD, Psoriasis, and IL-17: A Conversation with Kyle Williams, MD, PhD and Andrew
      Apr 28 2024

      In episode two, Susan Manfull interviews Dr. Kyle Williams, Director of the Pediatric Neuropsychiatry and Immunology Program at Massachusetts General Hospital, and Andrew about the potential link between strep, psoriasis, psoriatic arthritis, and obsessive-compulsive disorder (OCD).

      Andrew shares his personal experience of how his psoriasis and OCD symptoms improved after being treated with the biologic medication Cosentyx, which targets IL-17, a cytokine involved in inflammation.

      Dr. Williams discusses his research to investigate the relationship between IL-17, psoriasis, and OCD, including retrospective and prospective studies. They also discuss the need for a more multidisciplinary approach in medicine to understand better and treat the connections between physical and mental health.

      If you have Psoriasis and OCD and would like to share your story with Dr. Kyle Williams, please send an email to drwilliams@drkylewilliams.com.

      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.

      Recorded April 25, 2024

      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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      1 h et 6 min
    • The Intersection of Strep, Intractable OCD, Psoriasis, and IL-17: Continued conversation with Kyle Williams, MD, PhD and Andrew

      The Intersection of Strep, Intractable OCD, Psoriasis, and IL-17: Continued conversation with Kyle Williams, MD, PhD and Andrew
      Apr 28 2024

      It seemed our conversation from Episode 2 was left dangling so we continued talking. If you would like to hear a wee bit more, listen to this bonus content which captures most of that conversation, mostly musings about navigating the medical system and whether the division between psychiatry and neurology is artificial (another dangling conversation to be continued in another episode).

      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
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      16 min
    • The Immunological Basis of Eating Disorders and PANDAS/PANS

      The Immunological Basis of Eating Disorders and PANDAS/PANS
      Apr 6 2024

      Dr. Lauren Breithaupt, PhD, Assistant Professor of Psychiatry, based in the Eating Disorders Clinical and Research Program at Massachusetts General Hospital, will discuss her cutting-edge research about the immunological basis of eating disorders and PANDAS and PANS.

      After briefly describing her work on eating disorders, she talks about her new research on PANDAS and PANS. Entitled “Using a Machine Learning Approach to Identify Immune Biomarkers Associated with PANS/PANDAS,” Dr. Breithaupt’s latest work will focus on PANDAS/PANS, OCD, and restrictive eating disorders (R-ED) with the specific goal of identifying a disease specific biomarker for PANDAS/PANS. This would be a huge step forward for this neuroimmune disorder as, currently, there are no such biomarkers.

      To carry out this study, Dr. Breithaupt has established what is believed to be the largest protein library of PANS/PANDAS symptoms to date. The library includes proteins expression levels of 476 adolescents diagnosed with the disorders representing overlapping PANS/PANDAS symptoms -- OCD, restrictive-eating disorders -- as well as individuals with PANS/PANDAS and age matched healthy controls. The goal is to identify disease specific biomarkers for each disorder using this very large and comprehensive data set of patients with symptoms indicative of each disorder.

      Identifying protein biomarkers is important for diagnosis, the identification of novel targets for drug development, and to further understand the biological underpinnings of these disorders. Very importantly, the results of this proposed study will serve as pilot data for larger NIMH grants.

      Dr. Breithaupt’s current research is funded by The Alex Manfull Fund with generous contributions from The Louisa Adelynn Johnson Fund for Complex Disease and Neuroimmune Foundation.

      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.

      Recorded March 28, 2024


      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
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      50 min
    Maladie et pathologies physiques Hygiène et vie saine
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