Children and families with epilepsy look for support
05 April, 2017

Children and families with epilepsy look for support

/ 6 years ago

As the first of its kind in Fife, a new group has come together to support children and families living with epilepsy.

Around 400 children and families in Fife are effected by epilepsy, which is more than double the Scottish average. However, no framework exists to support them unless they are willing to go outside of the kingdom.

Niall Shaw, 41, a founding member of ‘Purple Caffe’, said: “As someone who has lived with epilepsy my whole life, and as a parent of a child now learning to live with the condition, it is really frustrating that there is not a forum in Fife for families to come together and meet.

“There is only support at the moment for adults but children and families also need a chance to engage with activities so they can understand that they are not alone.

“There are a variety of ways you can react to epilepsy. I’ve had the condition since childhood but I have been lucky enough that it has been quite controlled as an adult. Others can have multiple seizures a day which are dangerous and potentially fatal.”

The father from Kelty was diagnosed with epilepsy at the age of four, but symptoms had begun at an even younger age. Now his son Sam, 12, has been living with the condition for just over a year, but he is determined to show him the positive things he can still do with his life.

Describing what it feels like to have a seizure he said: “You are aware that it’s coming on but you can be in denial that it’s happening. If you suffer from clonic seizures like me then there would be a jerking of the limbs. One time I actually bit off a part of my tongue.

“After you feel absolutely wrecked and disorientated. It can take a couple of days to pull yourself together. But others don’t have the same symptoms, so not one size fits all. Others can have a few seizures a day that last a couple of seconds where you just freeze. Some people wouldn’t even know it had happened.”

Niall wants to encourage others that there are plenty of things you can still do despite the condition.

He continued: “My lifestyle has had to be moderated, so I don’t drink alcohol and I control my epilepsy with medication. But I have been very fortunate. The last time I had a seizure was about five years ago.

“I had to give up my licence for 12 months but I’m back driving now, others have to rely on public transport.

“When my son first had a seizure he was unconscious for four hours and doctors were concerned that he may have had brain damage. But he’s faced it head on. There’s been a bit of bullying but he wants to try and educate his peers about his condition. I think he takes some comfort in the fact that I’m dealing with it well.”

For more information about Purple Caffe email or follow the group on Facebook and Twitter.

This article was originally written by Gemma Ryder, and published in the Dunfermline Press on 28th March 2017.


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