When we think of arthritis we think of the old and the frail. But Systemic Juvenile Idiopathic Arthritis (sJIA) actually effects a significant number of children in the UK.
It was only when we talked to patients with the disease, that we uncovered another issue that was affecting a huge part of the patients’ day-to-day lives.
It was an issue that was affecting the child’s education and that couldn’t be ignored any longer.
The painful flare-ups can suddenly leave them feeling extremely ill during school hours. But many said that they found it difficult, or were too embarrassed to tell their teacher or carer that they felt unwell.
They also described how their condition left them feeling isolated from their classmates, often becoming a target for bullies. Making their day at school a distressful experience, in more ways than one.
A special band called an ‘Ouchieband’ was developed and aimed specifically at children with sJIA. The two-tone wristband (resembling the popular charity band worn by children) could be flipped so it could be worn with either the red or white side showing. The idea was simple. When a child is feeling fine with very little pain, they wear their Ouchieband with the white side showing. But when their arthritis flares up, they simply turn the Ouchieband over to show the red side. That way, the teacher or carer knows they need help.
The UK’s first patient support pack aimed at children with the sJIA was designed, introducing a friendly character called Ouchie, who explained their condition in a way that they would understand. The pack included a patient guide, a parent guide, a storybook and downloadable animation.
By the end of 2018, it is predicted that 90% of all patients in the UK will have received and benefitted from their very own Ouchieband and patient support pack.