PANS and PANDAS: Barnsley girl's battle with OCD and eating disorder after brain condition
Video report by Jonathan Brown
The mother of a girl who suddenly developed obsessive compulsive behaviour and an eating disorder due to a rare brain condition says there are still huge gaps in understanding of the illness.
Evie Prior, from Barnsley, was developing normally until she contracted tonsillitis and chicken pox aged four.
Within days, she became anxious and obsessive about cleanliness. She stopped eating and lost a fifth of her body weight.
But it took another four-and-a-half years for Evie to be diagnosed with a brain condition, known as PANS and PANDAS.
Now 16, she continues to suffer and struggles with simple everyday tasks like opening doors and making food.
Evie's mother, Helen, said: "If the diagnosis had come sooner, Evie wouldn't still be suffering today.
"People have a hard time understanding that those kind of symptoms can actually be caused by a physical illness, and awareness of this condition is so poor.
"Progress is not happening soon enough. These children cannot wait any longer, they need help."
What are PANS and PANDAS?
PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) are conditions that affect the brain.
People develop PANS and PANDAS between the age of three and adolescence.
They are triggered when a person's immune system attacks itself following the development of a streptococcal infection.
They can induce a variety of symptoms but are often grouped together because they share similarities.
Symptoms include anxiety, tics, emotional problems, irritability, behavioural regression, a sudden dip in school performance and insomnia.
Treatment can include input from mental health services and cognitive behavioural therapy.
Helen said the diagnosis saved Evie's life, but there remain huge gaps in support and understanding.
Evie now attends a special school and is in a stable condition but has flare-ups of her symptoms when she gets infections.
She makes social media videos about her struggles to raise awareness.
Evie said: "I don't get believed a lot, but I mainly get annoyed because no matter how many times we tell them, they don't understand."
Registered nurse Michelle Racey, said: "PANS PANDAS is still one of those diagnoses that has some level of disbelief within it, so we are trying to get people to understand that there is actually a position paper nationally on this that has been agreed."
There is reportedly only one NHS clinician in the UK for PANS PANDAS cases and there are currently no NHS guidelines on how it can be treated.
Vicky Burford, chair of trustees at the charity PANS and PANDAS UK, said it supports 6,000 families, but that figure is thought to be "the tip of the iceberg".
"It is long past time that the NHS takes concrete action on this so we need continued commitment from the government and the NHS," she said.
A spokesperson for the Department for Health said: “We’re aware of the challenges faced by people living with rare conditions such as PANS and PANDAS and we are committed to improving the health and care system for people living with rare diseases.
“Funding for research into rare diseases such as PANS and PANDAS is available through the National Institute for Health and Care Research and we strongly encourage researchers in this area to come forward with proposals that can further understanding.”
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