We are the only UK charity working to raise awareness of PANS and PANDAS.

Can you help us to support more families like Annie’s?

At just 14 years old, Annie spends much of her time crouched on the floor, refusing to be touched or dressed. She experiences constant physical and verbal tics, and uses compulsive repetitive behaviours and rituals to cope with extreme anxiety.

Annie’s symptoms appeared when she was 12, shortly after contracting Strep. After the initial course of treatment, things improved, but about a month later her mannerisms suddenly changed. Annie’s father said “She started to act like she was really, really young, talking in a baby voice and insisting on ‘walking’ on her knees.”

Annie’s parents sought medical advice and her case was passed between psychologists, paediatricians and GPs, her behaviour was attributed to sudden onset autism. However, Annie has had juvenile idiopathic arthritis from and early age, and at one of her regular appointments the rheumatologist, shocked by her change in behaviour, sent her for diagnostic tests and scans. This was when the family were first told about PANDAS. A specialist identified that Annie has severe delirium and was experiencing a significant delay between her thoughts, speech and actions, potentially explaining the regressive behaviours.

For Annie’s family, every GP appointment had become a battle; fighting for acknowledgement of PANDAS, for access to medication, and for Annie’s quality of life.

Discovering PANS PANDAS UK meant the family didn’t feel so alone, it showed them that other parents are experiencing this too.

With your help, we will continue to drive forward understanding and change. We need you on this journey towards more equitable recognition, treatment and support.