Hannah: Case Study from a 10-year old with RAS

"My name is Hannah. I am 10. I started having RAS fits when I was 6. A fit might start when I suddenly bang myself hard, especially if I am tired and hungry. There are a few moments before I actually go out (sometimes I realise it is about to happen and sometimes I don't). First everything goes black and I am told I suddenly stop what I am doing and crash to the ground. I have been told it isn't a crumple kind of fall like in a faint; my body goes stiff.

All I can hear is a buzz like a bee is stuck in my ear. Sometimes I see pictures, and other times it is just black and blotchy. I would say I feel 'dreamy' when I am unconscious and I've no idea how long I am out for. Everyone says my face goes really white.

When I start to come round, voices sound like an echo, far away, but they get closer and then really loud.

Once I am awake I feel vulnerable, scared and weak. I can't help crying and don't want to move. Most of all I want to keep lying down and cuddle something. The only way people can help me is to let me lie down for several minutes and not try to move me. I wish I could say this to my whole school, especially the supervisors at break. Last time, during break, I hit my head and had a 'near miss' (when it all goes black, but I realise what is happening and manage to lie down before I fit) the teacher kept saying "up you come", but I felt really faint and scared to get up. I squished myself into the ground, but she insisted on moving me; she was a lunchtime supervisor and didn't know about my RAS. A 'near miss' happens quite often

It would be better if the teacher or supervisor let me lie down for longer and not try and 'tidy me up'! Also it would help if she asked the other children to give me some space and a chance to recover by myself. It is OK if my friend Sophie stays, who knows about my problem because she has seen me have a fit at home, when she came over to play one day; she is really calm and ok about it. She didn't tell anyone except her Mum; and she didn't avoid me afterwards. She is cool about it.

The main thing to understand is it is best to let me decide when I feel ready to get up, otherwise, I might fit again. No one seems to understand that except my Mum and my sisters!

Most of the time I don't let having RAS worry me. It only does if I have recently had a seizure. After about a week it stops worrying me, but when I am at school I am always wary of getting banged. All the same, I love Judo Club, I am GA in the netball A team and I also do swimming and hockey. Hockey worries me more as I think the risk of getting hit hard is too high.

It is fine for everyone else to just forget about it, let me deal with it, just treat me like everyone else.

Changes to my life:

The only way I feel RAS has changed my life is that I have a few days of feeling vulnerable after a seizure or a 'near miss'. My concentration is also affected, especially after a seizure, and I am more aware of the unexpected, because it might make me have a fit. Mostly though, I am just the same as everyone else, and I want to have a go at almost everything: last month I swam with 10 metre whale sharks!