A family from Barnsley is fundraising for treatment for their daughter after the NHS removed her condition from treatment guidelines.
Evie Prior was a typically happy child, but changed after a bout of chicken pox when she was four and began to show obsessive compulsive symptoms and have temper tantrums.
After four years of uncertainty, Evie was eventually diagnosed with PANDAS, a little-known autoimmune condition which causes the antibodies produced during infections to attack areas of the brain responsible for behaviours and emotions. Symptoms include sudden and extreme behaviour changes, separation anxiety and OCD.
Evie’s symptoms led her to lose 17% of her bodyweight in seven months after developing severe OCD and anxiety surrounding food contamination.
Evie has received two successful rounds of a specialist treatment which uses other people's antibodies to strengthen the immune system. However, changes to the NHS access guidelines mean Evie can no longer receive this and her condition is worsening again.
Her family are fundraising for treatment overseas, but costs can stretch to more than £10,000 for one round of therapy, and it is not known how many will be needed.
This is a major cause for concern for Helen, who believes treatment access is like a “postcode lottery”, with inconsistencies between NHS trusts. She believes the infusions vastly improves Evie’s quality of life and could put her into remission.
More information about PANDAS can be found here.