Resources for Affected Adults

New Onset, Undiagnosed, Misdiagnosed, and Unresolved Cases

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.

Age Criteria
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 (communications@expand.care).

Resources

Support Groups:

The International Immune Behavioural Health Support Group for Adults  (a Facebook Support Group hosted by EXPAND).

Advocacy Organizations

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.

Webinars:

  1. SANE-Sweden (English sub-titles to be added soon): “PANS in Adults” with Prof. Janet Cunningham, member of the EXPAND Scientific and Medical Advisory Board.
  2. American Association for the Advancement of Science: “Autoinflammatory Diseases in Adults: Behind the Scenes of Chronic Inflammation.”

Papers specific to adults affected by PANS/PANDAS:

  1. Group A Beta-Hemolytic Streptococcus-Induced Tic-Like Movement Disorder in an Adult: A Case Report (August 2022, Cureus, an open access medical journal)
  2. PANDAS in an Adult?: A Case Report (January – June 2022, Indian Journal of Private Psychiatry)
  3. PANDAS: A Rare Case Report (February 2016, International Journal of Science and Research)
  4. Pediatric Autoimmune Neuropsychiatric Disorders (PANDAS): A Case Report (January 2003, The National medical journal of India)
  5. The Question of PANDAS in Adults (June 2001 Biological Psychiatry)

Articles, Blogs, Social Media:

  1. UK National Diversity Awards Nominee, Evie Meg (“This Trippy Hippy”): Evie is a young adult YouTube and TikTok influencer. She previously shared videos of her life with tics, seizures and spasms, and was recently diagnosed with PANDAS. She now uses her platform to also provide PANS/PANDAS information such as these “10 Facts About PANDAS (The Autoimmune Disorder).”
  2. “Finding PANS/PANDAS Treatment as an Adult” – March 2021, ASPIRE.care (Alliance to Solve PANS and Immune-Related Encephalapothies)
  3. “These Three Myths About PANS/PANDAS Are Ruining Lives”  – July 2018, LymeDisease.org
  4. “Grown Up PANDAS: A Fascinating Case Study” (January 2020, Jory Goodman M.D., Psychology Today)
  5. “Adult PANDAS: Seek and Ye Shall Find”  (January 2013, Jory Goodman M.D., Psychology Today)