PANS PANDAS UK

For Adults with PANS or PANDAS

PANS or PANDAS as an Adult

Whether you are an adult who first experienced onset of PANS and PANDAS  as an adult, or someone for whom symptoms of PANS and PANDAS began in childhood and have persisted into adulthood, we know that access to diagnosis and treatment is extremely challenging in the UK at present.

We are ensuring that adults with PANS and PANDAS are firmly on the agenda in all our conversations with policymakers as we continue to champion improved healthcare for everyone affected by the conditions. We know that this process will take time, however we are working hard to push for positive change.

Whilst we work to develop our resources for you, you might find some of the information found here helpful.

Support for Families

If you are concerned that your family member may have PANS and PANDAS, or if they have a diagnosis already, you are not alone.

Our Partner: EXPAND

An informal alliance of European patient advocacy organizations came together in 2018 to respond with one voice to a medical journal article concerning PANS/PANDAS treatment. In the ensuing months, they continued to discuss their challenges seeking appropriate treatment and expanding their understanding of this crippling disease.

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Glossary

  • ADHD
    Attention Deficit Hyperactivity Disorder
  • AE
    Auto-immune Encephalitis
  • ARFID
    Avoidant Restrictive Food Intake Disorder
  • ASD
    Autism Spectrum Disorder
  • CAMHS
    Child and Adolescent Mental Health Service
  • CBT
    Cognitive Behavioural Therapy
  • Dysgraphia
    difficulty writing by hand
  • EHCP
    Education, Health and Care Plan
  • Emotional Lability
    Rapid, and dramatic changes in mood (for example uncontrollable laughter to crying)
  • Enuresis
    wetting
  • GAS
    Group A Streptococcal infection
  • NHSE
    NHS England
  • NICE
    National Institute for Health and Care Excellence
  • OCD
    Obsessive Compulsive Disorder
  • PP
    PANS PANDAS
  • PPUK
    PANS PANDAS UK
  • PPN
    PANS Physicians Network
  • PPSG
    PANS PANDAS Steering Group
  • SENCo
    Special Educational Needs Coordinator
  • SIGN
    Scottish Intercollegiate Guidelines Network to the glossary
  • Tic
    Sudden repetitive movement (motor tic) or sound (vocal tic) which is difficult or impossible to control