PURA syndrome
A guide for school and nursery staff
For teachers, teaching assistants, nursery staff and school nurses.
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.
Things you might notice
- Low muscle tone (floppiness), which can affect sitting, moving and posture
- Difficulties with feeding and swallowing
- Learning disability and delayed development
- Little or no speech. Many understand more than they can say
- Walking later, and some don’t walk
- Seizures (epilepsy) are common and can be hard to control
How you can help
- Follow their individual care plans for seizures, eating and drinking, and moving and handling. Ask us or the school nurse if anything’s unclear.
- Give them time to respond, and use their way of communicating: signs, pictures or an AAC device.
- Talk to them, not just about them.
- Tell us about changes, good or bad: tiredness, eating, seizures or something new they’ve done.
- 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).