Susan Newman Manfull | Guest Columnist Published October 7, 2023
Portsmouth’s Memorial Bridge will be illuminated green Monday night in recognition of PANDAS/PANS Awareness Day. In our state and across the nation, Oct. 9 is designated to call attention to this little-known group of medical disorders with peculiar acronyms that belie their horrific qualities. As proclaimed by Governor Sununu, this is the day for New Hampshire to realize that “it is imperative that there be a greater public awareness of this health issue, and more must be done to increase activity at the local, state, and national levels so that children can be more quickly diagnosed and treated.”
My daughter Alexandra “Alex” Manfull died at 26 years old from complications due to PANDAS/PANS and I hope that part of her legacy will be that no other young adult or child will suffer as she did.
We are grateful to Governor Sununu for signing this proclamation and affixing the Seal of the State of New Hampshire to the scroll-like document. The document includes a good definition of these disorders and acknowledges that PANDAS/PANS is often misdiagnosed and undertreated. This is critically important information – lives depend on physicians, nurses, mental health workers, teachers, and legislators knowing this information − but proclamations are only as effective as we are in amplifying their message. Maybe people will ask why the bridge is green and you can explain after reading this letter.
What is PANDAS/PANS? Pediatric Autoimmune Neuropsychiatric Disorder associated with Streptococcal infection (PANDAS) was first recognized in the 1990s. When it became apparent that, in addition to strep, there were other triggering infections (bacteria such as mycoplasma pneumonia, Lyme, bartonella and viruses like Epstein-Barr virus, Coxsackie, and coronavirus) that could lead to neuropsychiatric symptoms, a broader category, PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) was created which subsumes PANDAS. Symptoms are varied but always include obsessions and compulsions. Other cardinal symptoms include severely restricted food intake and motor or vocal tics as well as elevated anxiety, sleep disturbances, hyperactivity, sensory issues, school avoidance, deterioration in handwriting and math skills, explosive rage, extreme impulsivity, self-injurious behavior, and suicidal ideation.
Over time, it also became apparent that the disorders were not limited to pre-pubescent children. Although PANDAS/PANS occurs more frequently in children, it also occurs in adolescents and young adults.
Research suggests that, in some people, infections trigger the immune system to dysregulate and begin producing autoantibodies that attack healthy brain tissue, leading to neuroinflammation. The symptoms can be difficult to distinguish from those seen in traditional psychiatric disorders, but the cause is fundamentally different and hence the effective treatments that can achieve lasting success are different. Treatments typically include antibiotics (for any infections); over-the-counter anti-inflammatory drugs such as Motrin and Aleve and corticosteroids (for possible neuroinflammation); and, perhaps, immunomodulatory procedures (to address immune system dysregulation). The earlier the recognition (and diagnosis) and correct treatment, the better the prognosis and recovery.
Unfortunately, many medical providers are not familiar with infection-related, immune-mediated neuropsychiatric disorders, so misdiagnoses are rampant and disastrous. My daughter was not diagnosed for years after neuropsychiatric symptoms fitting a PANDAS diagnosis surfaced following strep and mono. She diagnosed herself, after years of seeing psychiatrists who failed to do so.
My husband and I donated Alex’s brain to the brain bank at Georgetown University Medical Center where The Alex Manfull Fund helped to establish the POND (PANDAS/PANS and Other Neuroimmune Disorders) Brain Bank. Neuropathological evaluations revealed brain damage in the basal ganglia (which is responsible primarily for motor control and executive, emotional, and cognitive functions) and nearby structures of her brain.
Other young people and their families lose years of their lives searching for a diagnosis and then, for a medical provider. There is a woeful shortage of physicians and mental health providers who are knowledgeable about these disorders, a crisis that takes us back to Governor Sununu’s proclamation: where is the funding to carry out “greater public awareness of this health issue” that Governor Sununu has described as imperative? Where is the funding to “increase activity at the local, state, and national levels so that children can be more quickly diagnosed and treated”? Let’s work together to find that funding.
Our small state is fortunate to have a world class PANDAS/PANS clinic at Dartmouth Medical School. Called PING – Psychiatry, Neurology, Immunology Group – this clinic has a multi-disciplinary team that can diagnose and treat these disorders. The Alex Manfull Fund is working with PING to establish programs to train more physicians in this area. This is the future.
It is increasingly recognized that as many as 30% of psychiatric disorders are not responsive to conventional psychiatric treatments. Psychiatric diagnoses must rule out other medical disorders, and the treatments must also address lingering infections, neuroinflammation, and immunological issues in those patients.
The Alex Manfull Fund is prepared to work with you, Governor Sununu, as well as our state legislators, and US Senators Maggie Hassan and Jeanne Shaheen, and US Congressional Representatives Chris Pappas and Ann McLane Kuster to make New Hampshire a model state.
Thank you, Governor Sununu, for identifying these critical issues and thank you, City of Portsmouth, for lighting the Memorial Bridge green, the color used to represent PANDAS/PANS. But all the proclamations and green bridges in the world will not change this dire situation until action is taken to ensure those afflicted with PANDAS/PANS are “more quickly diagnosed and treated.”
Commentary: Here’s why Memorial Bridge will be lit green for PANDAS/PANS Awareness Day
Updated: November 17, 2023 by bmanfull@comcast.net
Susan Newman Manfull | Guest Columnist
Published October 7, 2023
Portsmouth’s Memorial Bridge will be illuminated green Monday night in recognition of PANDAS/PANS Awareness Day. In our state and across the nation, Oct. 9 is designated to call attention to this little-known group of medical disorders with peculiar acronyms that belie their horrific qualities. As proclaimed by Governor Sununu, this is the day for New Hampshire to realize that “it is imperative that there be a greater public awareness of this health issue, and more must be done to increase activity at the local, state, and national levels so that children can be more quickly diagnosed and treated.”
My daughter Alexandra “Alex” Manfull died at 26 years old from complications due to PANDAS/PANS and I hope that part of her legacy will be that no other young adult or child will suffer as she did.
We are grateful to Governor Sununu for signing this proclamation and affixing the Seal of the State of New Hampshire to the scroll-like document. The document includes a good definition of these disorders and acknowledges that PANDAS/PANS is often misdiagnosed and undertreated. This is critically important information – lives depend on physicians, nurses, mental health workers, teachers, and legislators knowing this information − but proclamations are only as effective as we are in amplifying their message. Maybe people will ask why the bridge is green and you can explain after reading this letter.
What is PANDAS/PANS? Pediatric Autoimmune Neuropsychiatric Disorder associated with Streptococcal infection (PANDAS) was first recognized in the 1990s. When it became apparent that, in addition to strep, there were other triggering infections (bacteria such as mycoplasma pneumonia, Lyme, bartonella and viruses like Epstein-Barr virus, Coxsackie, and coronavirus) that could lead to neuropsychiatric symptoms, a broader category, PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) was created which subsumes PANDAS. Symptoms are varied but always include obsessions and compulsions. Other cardinal symptoms include severely restricted food intake and motor or vocal tics as well as elevated anxiety, sleep disturbances, hyperactivity, sensory issues, school avoidance, deterioration in handwriting and math skills, explosive rage, extreme impulsivity, self-injurious behavior, and suicidal ideation.
Over time, it also became apparent that the disorders were not limited to pre-pubescent children. Although PANDAS/PANS occurs more frequently in children, it also occurs in adolescents and young adults.
Research suggests that, in some people, infections trigger the immune system to dysregulate and begin producing autoantibodies that attack healthy brain tissue, leading to neuroinflammation. The symptoms can be difficult to distinguish from those seen in traditional psychiatric disorders, but the cause is fundamentally different and hence the effective treatments that can achieve lasting success are different. Treatments typically include antibiotics (for any infections); over-the-counter anti-inflammatory drugs such as Motrin and Aleve and corticosteroids (for possible neuroinflammation); and, perhaps, immunomodulatory procedures (to address immune system dysregulation). The earlier the recognition (and diagnosis) and correct treatment, the better the prognosis and recovery.
Unfortunately, many medical providers are not familiar with infection-related, immune-mediated neuropsychiatric disorders, so misdiagnoses are rampant and disastrous. My daughter was not diagnosed for years after neuropsychiatric symptoms fitting a PANDAS diagnosis surfaced following strep and mono. She diagnosed herself, after years of seeing psychiatrists who failed to do so.
My husband and I donated Alex’s brain to the brain bank at Georgetown University Medical Center where The Alex Manfull Fund helped to establish the POND (PANDAS/PANS and Other Neuroimmune Disorders) Brain Bank. Neuropathological evaluations revealed brain damage in the basal ganglia (which is responsible primarily for motor control and executive, emotional, and cognitive functions) and nearby structures of her brain.
Other young people and their families lose years of their lives searching for a diagnosis and then, for a medical provider. There is a woeful shortage of physicians and mental health providers who are knowledgeable about these disorders, a crisis that takes us back to Governor Sununu’s proclamation: where is the funding to carry out “greater public awareness of this health issue” that Governor Sununu has described as imperative? Where is the funding to “increase activity at the local, state, and national levels so that children can be more quickly diagnosed and treated”? Let’s work together to find that funding.
Our small state is fortunate to have a world class PANDAS/PANS clinic at Dartmouth Medical School. Called PING – Psychiatry, Neurology, Immunology Group – this clinic has a multi-disciplinary team that can diagnose and treat these disorders. The Alex Manfull Fund is working with PING to establish programs to train more physicians in this area. This is the future.
It is increasingly recognized that as many as 30% of psychiatric disorders are not responsive to conventional psychiatric treatments. Psychiatric diagnoses must rule out other medical disorders, and the treatments must also address lingering infections, neuroinflammation, and immunological issues in those patients.
The Alex Manfull Fund is prepared to work with you, Governor Sununu, as well as our state legislators, and US Senators Maggie Hassan and Jeanne Shaheen, and US Congressional Representatives Chris Pappas and Ann McLane Kuster to make New Hampshire a model state.
Thank you, Governor Sununu, for identifying these critical issues and thank you, City of Portsmouth, for lighting the Memorial Bridge green, the color used to represent PANDAS/PANS. But all the proclamations and green bridges in the world will not change this dire situation until action is taken to ensure those afflicted with PANDAS/PANS are “more quickly diagnosed and treated.”
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