Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric Disorders
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.
Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric Disorders
S1 E1 Bonus: PANDAS/PANS Advocacy Day on Capitol Hill - Join us on April 12, 2024
In this bonus episode, I will be talking about our second annual PANS/PANDAS Advocacy Day on Capitol Hill, a joint event planned by the National Alliance of PANS/PANDAS Action (NAPPA) and The Alex Manfull Fund (TAMF) to be held on Friday, April 12th in Washington, DC. My guests -- Amanda Peel Crowley, co-founder of NAPPA, and Paul J. Murphy, Treasurer of The Alex Manfull Fund -- have all the details!
LINK to register: https://thealexmanfullfund.org/advocacy-day-on-capitol-hill-2024/
On Saturday, April 13th, our second annual 5K Run/Walk will take place.
LINK to register: https://thealexmanfullfund.org/the-alex-manfull-fund-2024-5k-run-walk/
BREAKING NEWS: April 8th marks more than (just) solar eclipse!
The Alex Manfull Fund Silent Auction will go live on Monday, April 8th at 12:00 p.m. and will end Sunday, April 14th at 9:00 p.m. with the culmination of the weekend events.
The ECLIPSE serves as a metaphor for the unique and marvelous nature of "36 Hours in DC," a time when patients, advocates, doctors, researchers, scientists, health providers, and legislators come together to advance change on PANDAS/PANS. Where the lives lost will move us all to a place where no life ever again be cut short -- or interrupted -- by infection-associated neuroimmune disorders.
Together, we can ECLIPSE PANDAS/PANS!
Here is the LINK to view the auction items: https://alexmanfullfund.betterworld.org/auctions/going-distance-capitol-hill-poto
Recorded March 29, 2024.
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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