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

  • By: Susan Newman Manfull PhD
  • Podcast

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

By: Susan Newman Manfull PhD
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  • Summary

  • 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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Episodes
  • S1 E7: Dr. Tim Ubhi Talks about Treating PANDAS/PANS in the UK at his new London PANS Clinic

    S1 E7: Dr. Tim Ubhi Talks about Treating PANDAS/PANS in the UK at his new London PANS Clinic
    Sep 29 2024

    Susan Manfull, PhD crossed the pond to speak with Dr. Tim Ubhi, consultant paediatrician and fellow of the United Kingdom’s Royal College of Paediatrics and Child Health. Dr. Tim, as his patients call him, has dedicated his life to children’s health, beginning with conducting research on using botulinum toxin to help children with cerebral palsy, work for which he was awarded the prestigious Michael Blacow prize by the Royal College of Paediatrics and Child Health to, currently, focusing on treating children with PANDAS, work that has earned him the deepest gratitude from his over 1200 patients and their families.

    Dr. Ubhi is the founder of the newly established London PANS Clinic and of the Children’s e-hospital in 2013. He is also a founding member of the UK PANS/PANDAS Physicians Network and is also a member of the Scientific and Medical Advisory Board of the European Immunopsychiatry Association (EXPAND).

    Dr Ubhi talks about what drew him to pediatrics and to PANDAS and PANS, in particular. The conversation veers into some interesting history underscoring how the slow speed with which medicine changes has affected the recognition and treatment of PANDAS and PANS. And yet, he has plowed forward and opened a clinic in London and has plans to train physicians in this field in the northeast of England, collaborate with practitioners outside of the UK, and conduct research using, for example, innovative techniques such pupillometry. And more -- Dr. Ubhi is clearly making extraordinary advances in the UK.

    Highly respected in his chosen field in the UK and well beyond, he is in demand to speak at conferences, including by The Alex Manfull Fund Symposium on Neuroimmune Psychiatric Disorders where he will join the Clinical Panel to address questions from physicians and other practitioners about treating persons diagnosed with PANDAS and PANS to be held on November 2, 2024 in Portsmouth, New Hampshire. (For more information, please visit: https://thealexmanfullfund.org/tamf-2024-symposium/ .)

    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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    1 hr and 26 mins
  • S1 E6: The Story Behind AB2105, California's Bill to Require Insurance Coverage for PANDAS/PANS Treatment

    S1 E6: The Story Behind AB2105, California's Bill to Require Insurance Coverage for PANDAS/PANS Treatment
    Aug 25 2024

    In this episode of Untangling PANDAS & PANS, Susan Manfull, PhD talks with April Ronay, founder of California Coalition for PANS/PANDAS (aka, Cal-Coalition), and Shari Strulson, one of the founding members of Cal-Coalition. Both are teachers, by profession, both have a family member with PANS, and both are tirelessly working to pass legislation in California to require insurance companies to provide coverage for doctor-prescribed treatments for PANDAS and PANS. They are currently working to pass AB2105, a bill sponsored by Assembly member Josh Lowenthal.

    April is a second-grade teacher from Long Beach, California. Shari is a former fourth-grade and enrichment teacher in Bridgeport, Connecticut who currently resides in Redondo Beach, California.

    The PANDAS/PANS community is a remarkably close community. Comprised of patients, family members, advocates, policy makers, researchers, and practitioners, this hybrid virtual and in-person community extends across the United States and into many other countries around the world. PANDAS/PANS can be such an excruciatingly debilitating disorder that supportive relationships are easily engendered among care-takers whose care-burden demands often exceed those of Alzheimer’s disease. Many wear multiple hats. Untangling PANDAS & PANS cover all members of this intertwined community.

    What drives April and Shari -- who wear parent and advocate hats -- to take on the huge task of passing legislation for the benefit of all?

    Hear their stories on this podcast episode. Meet them (and many other families and advocates) on Advocacy Day in Long Beach, California on September 14, 2024 (9:00 a.m. to 12:00 p.m.).

    Eventbrite Advocacy Day Agenda:
    https://bit.ly/PANS_PANDAS_Advocacy_Day

    To send a letter of support to Governor Gavin Newsom (once the bill is on his desk), go to https://www.gov.ca.gov/contact/ for online submission or mail to

    Governor Gavin Newsom
    1021 O Street, Suite 9000
    Sacramento, CA 95814

    For more information about Cal-Coalition, visit www.calcoalition.com and follow on Facebook@CalCoalition-for-PansPandas-Advocacy (other social media handles on website).

    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
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    51 mins
  • S1 E5: Earl Harley, MD Talks About How Otolaryngologists Can Assist in the Treatment of PANDAS

    S1 E5: Earl Harley, MD Talks About How Otolaryngologists Can Assist in the Treatment of PANDAS
    Jul 28 2024

    Earl Harley, MD, FACS, FAAPS is a highly regarded pediatric otolaryngologist (Ears, Nose, and Throat doctor or ENT) at Georgetown University Medical Center and a beloved assistant professor at the Medical School. Dr. Harley is widely respected for his expertise in working with patients who have been diagnosed with PANDAS and PANS. Families travel from across the country (and well beyond) for consultations regarding adenotonsillectomies for their children suffering from these neuroimmune psychiatric disorders.

    Dr Harley received his medical degree from Howard University School of Medicine in Washington, DC. He completed an internship at Walter Reed Hospital (previously named National Naval Medical Center). He did his residency in otolaryngology at Oakland Naval Hospital in California and, later, two pediatric ENT fellowships: Children’s National Medical Center and George Washington University in DC and the Massachusetts Eye and Ear Infirmary and Harvard University in Boston, Massachusetts.

    At the same time, Dr Harley pursued a remarkable career of over 20 years in the U.S. Navy in various hospitals and on ships. He attributes his career as an ENT to the Navy and his work as a flight surgeon.

    Susan Manfull, PhD caught up with Dr Harley just as he emerged from surgery — he had just performed a adenotonsillectomy with a patient diagnosed with PANDAS. Learn about his distinguished career spanning over 50 years and about how he came to know about PANDAS and PANS.

    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
    Show More Show Less
    45 mins

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