Ground-Breaking Genetic Research into PANS/PANDAS

CONTRIBUTE TO GROUND-BREAKING GENETIC RESEARCH INTO PANS*/PANDAS** 

* Pediatric Acute-onset Neuropsychiatric Syndrome

** Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections

In June 2022, members of the EXPAND Scientific and Medical Advisory Board and their collaborators published the first comprehensive assessment of genetic factors involved in PANS/PANDAS.***  Prof. Herbert M. Lachman at the Albert Einstein College of Medicine (New York, USA) and Prof. Peter van der Spek at Erasmus MC (Rotterdam, Netherlands) have continued to focus on genetic mutations related to PANS/PANDAS. A second paper is in the works, and additional research is planned.

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PANS and PANDAS are severe, disabling and even life-threatening conditions that can develop insidiously, but often erupt so abruptly that they leave a child/adolescent almost unrecognizable in their mood and behavior from one moment to the next. Symptoms include OCD, restrictive eating, tics, psychosis, a sudden deterioration in school performance (including the ability to write/draw), motor/sensory abnormalities, agitation, aggression, regression, insomnia/sleep disturbance, enuresis/urinary frequency, and more. 

PANDAS, a subset of PANS,  is triggered by a Strep infection. PANS can be triggered by other infections, metabolic disturbances, or other inflammatory reactions. Infectious triggers include upper respiratory and sinus infections caused by bacteria (Mycoplasma pneumonia) viruses (influenza, SARS-CoV-2, which causes COVID-19), and tick-borne infections (Lyme borreliosis). It is not always possible to identify the trigger.

Undiagnosed and unresolved psychiatric and cognitive problems prevent those with PANS/PANDAS from attending school, socializing with their peers, and participating in sports and other extra-curricular activities. They lose their childhoods and adolescence. 

To make matters worse, parents are sometimes seen as being overly intrusive or are even accused of seeking attention by exaggerating or making up their child's symptoms.

PANS/PANDAS are often associated with indications of inflammation and the development of autoantibodies that can attack the brain. The diagnosis is controversial because signs of inflammation and autoantibodies are often absent in many children/adolescents showing symptoms. Cases where PANS/PANDAS are superimposed on an autism or other neurodevelopmental disability are even more difficult to discern. As a result of these complexities, clinicians are unwilling to make the diagnosis. This  prevents affected children/adolescents from receiving effective treatments with antibiotics, anti-inflammatory medications and immunomodulators.

While the acronyms PANS and PANDAS indicate that these are pediatric illnesses, those afflicted may struggle with it into adulthood or it can even manifest in adulthood. A better understanding of the genetics involved could significantly help these patients as well.

*** https://www.nature.com/articles/s41598-022-15279-3

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