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