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Time to get angry about epilepsy

Beat it, treat it defeat it - whichever way you look at it we need to deal with it.

Epilepsy.

It's the most prevalent neurological disease in the world. It's by far and away the most severe of all life-long childhood conditions, exceeding the incidence of diabetes and asthma. It's the least funded alongside both of these and seriously under funded along side autism and mental health illnesses - and not just by a small margin.

But why?

It's really simple, we have tried to normalise it because of the stigma - and yet it remains seriously stigmatised, perhaps more so than ever before given our modern times.  It's time to tell it like it really is. We need to shout very loud about the seriousness of epilepsy and the catastrophic and devastating effects it can have on family life, as well as the risk of death. We need to get very angry.

Our amazing 18 year old son, Muir, has one of the most severe epilepsy syndromes, Dravet Syndrome. It began in infancy. His epilepsy has dramatically changed our life's journey. He is the reason that Jonny and I established the Muir Maxwell Trust. Muir, like so many others, is now  profoundly brain damaged by his epilepsy. His life is limited both in terms of life goals and longevity. Every day is a battle for him and those caring for him, including siblings, teachers and carers. Muir requires 2:1 support at all times.

Whilst the rest of the UK has been enjoying the beautiful sunshine over Easter, Muir has struggled with sleep. Why he is affected neurologically when the weather changes I don't know but my Facebook world of families dealing with seriously epilepsy in their children has experienced the same problem and the Trust received a significantly increased number of requests for epilepsy alarms this week too. Seizure control is lost and our children struggle. Some end up in ITU. Others, like Muir, self-manage with difficulty and the house is awake at night and the carers struggle to cope with behaviours by day. Essential tasks like new shoes for school result in embarrassing moments when Muir gets angry and tries to kick a sales assistant. He smacks his carers. A haircut takes twice as long as it should because he can't sit still and crazy forms of entertainment, like making 'hair soup' with hair and a water spray, as well as wandering around the salon spraying the plants are the only way to achieve the task.

Severe epilepsy and in particular, serious epilepsy syndromes in children are incredibly difficult to manage and for most people, extremely difficult to understand. On the outside these children can appear to be reasonably normal, although most have serious speech and language difficulties and limited understanding - but they do have understanding and that's what makes it all so complicated. They are more aware than they appear, they are more astute than they appear, they are more capable than they appear. That's what enables self-management at an impressive level that only a parent or a carer is ever aware of. But the self-management has its limitations and when the often unseen neurological activities win through, the consequences are profound.

I met with members of Scottish Government recently with a view to garnering their support by sharing my epilepsy story and the story of others. They wrote to other Government bodies and some charities for their opinion of the circumstances I described in connection with Muir's epilepsy and people like him with profound and multiple learning disabilities. My issue is the lack of recognition and understanding of the severe and complex needs which means that the needs are never met. This week I had sight of some of the responses, including this:

"Most people in this group are unable to walk unaided."

Frankly, I rest my case. In Scotland and the rest of the UK we are absolutely failing to recognise and understand the needs of those with profound and multiple learning disabilities, 66% of which have epilepsy.

And so I say to our next Government it is time to deal with Epilepsy, for once and for all!

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