PURA syndrome
For new carers and support workers
For respite workers, personal assistants, babysitters and new members of the care team.
PURA syndrome is a rare genetic condition. It’s caused by a change in a gene called PURA, which is important for how the brain develops. Every person with PURA syndrome is different.
In most children it’s a new change that wasn’t inherited from either parent. It isn’t catching.
Before you start
- Read their care plans with the family: seizures, eating and drinking, medicines, and moving and handling. Follow them exactly.
- Ask to be shown how they communicate, how they like to be moved and positioned, and their routines.
Good to know
- Many people with PURA syndrome understand more than they can say. Tell them what you’re about to do, and wait for their response.
- Low muscle tone can affect posture, moving and swallowing. Follow their plans for positioning and for eating and drinking.
- Seizures are common. Know where their seizure plan and any rescue medicine are kept. If they have a seizure, follow their seizure plan. Call 999 if a seizure lasts more than 5 minutes (or longer than is usual for them) (NHS).