There are two categories of adult patients; those who experience an onset of symptoms as an adult, and those who became ill in childhood, but have symptoms persisting into adulthood. It is not yet clear whether adult PANS is a distinct clinical entity, chronic PANS, or a continuation of PANS that was not properly diagnosed in childhood.
With each passing year, advocates expect an increase in adult cases, particularly given the increase in awareness post-2009 and the transition of many pediatric cases into adulthood. Unfortunately, research has not yet focused on this segment of the patient community, but the need for resources has been heard.
According to the National Institutes of Health, “PANDAS is considered a pediatric disorder and typically first appears in childhood from age 3 to puberty. Reactions to strep infections are rare after age 12, but researchers recognize that PANDAS could occur, in adolescents. It is unlikely that someone would experience post-strep neuropsychiatric symptoms for the first time as an adult, but it has not been fully studied.”
There is no age criterion for PANS.
Challenges to Receiving a Diagnosis and Treatment as an Adult
PANS/PANDAS is a clinical diagnosis based on the patient’s health history, current symptoms, and by excluding other conditions that could explain the constellation of symptoms.
Even for pediatric cases, clinicians are hesitant to diagnose a condition for which there are no biomarkers. Advocacy organizations such as ours, allied with researchers and clinicians committed to our patient community, are trying to reduce the level of discomfort and increase the overall number of medical and mental health practitioners caring for our patient population by providing a host of educational opportunities. Currently, there are few clinicians who will take on adult patients. Patients seeking care, who come across clinicians willing to explore the possibility of immune-mediated neuropsychiatric conditions, can help EXPAND and our member organizations by informing us of those resources (firstname.lastname@example.org).
The International Immune Behavioural Health Support Group for Adults (a Facebook Support Group hosted by EXPAND).
EXPAND’s vision is of a future in which children, adolescents and adults with immune-mediated behaviour and neuropsychiatric conditions obtain a timely diagnosis from informed, compassionate providers. A future in which they receive individualized, integrated and transdisciplinary treatment regardless of their age or where they live. A future that includes access to additional services necessary for patients and their families to support an optimal recovery.
The Alex Manfull Fund: The Alex Manfull Fund’s advocacy efforts have a particular emphasis on the manifestation of PANS and PANDAS in adolescents and young adults. Their goal is that no other person will lose his or her life to PANDAS or PANS, as did Alex Manfull, or lose the years it can take to successfully treat these post-infectious neuroimmune disorders.
Papers specific to adults affected by PANS/PANDAS:
Articles, Blogs, Social Media: