• Poppy Evans

let's talk about: epilepsy.

Over 500,000 people with epilepsy in the UK alone, so why is there not a greater awareness of the condition?

Grandma holding her granddaughters hair / fully grown

The first time my younger brother had a seizure, he was in class at school. I was in a history lesson at the time and was called to go to him. I ran to his classroom, where his teacher looked unsettled. She had initially thought he was playing around and had told him off. A few days after the incident, another teacher was overheard saying to a colleague that he hoped my brother falling over had “knocked some sense into him”.

After being given tests and scans, my brother was soon diagnosed with Focal Onset Secondary Generalised Epilepsy in the left temporal lobe of his brain. We learnt that his brain had constant spikes. He was often told off for not concentrating or writing down homework at school and was labelled “one of the naughty kids”. When in fact, due to his neurological disorder, epilepsy, he was having constant miniature seizures, which is why he struggled in lessons.

The school took a proactive approach to my brother’s experience. They carried out a course on epilepsy to spread awareness of the illness across the teaching staff. However, this has had a profound impact on my younger brother’s life. I wonder, if there had been a greater understanding of epilepsy, would my brother have had to suffer in this way? The school could have recognised signs of epilepsy rather than assuming laziness and incompetence.

what is epilepsy?

Epilepsy is a complex neurological condition that has physical, mental and emotional consequences on those who suffer from it. One is only diagnosed with epilepsy once they have had recurring seizures that stem from the brain. A seizure occurs when a sudden interruption to the brain’s neurons causes an abnormal response. Not all seizures are caused by epilepsy, but there are over forty different types of epileptic seizures – this is what makes it such a complex condition. As there are so many types of seizures, each person is affected by, deals with, and recovers from them differently.

Many people are mistaken in thinking that epilepsy is something that will not affect them in their lifetime. But the scary truth is that anybody can develop epilepsy at any point in their life. No matter your age, race or social class, you or a loved one could experience epilepsy. Current statistics show over 500,000 people with epilepsy in the UK alone. This is approximately 1 in 100. Over 65s and children are the most common to be diagnosed with the condition. As epilepsy is such an intricate illness and can vary from person to person, the cause of an individual’s epilepsy can be challenging to determine. However, the most common causes are head injuries, difficulties during birth or genetic inheritance.

Thankfully, due to extensive knowledge and understanding of epilepsy among professionals, seizures can usually be controlled by medication. Additionally, as epilepsy is often triggered by pubescent change, it is common for children to outgrow it. However, in very extreme cases, SUDEP is a daunting possibility within the illness. SUDEP stands for Sudden Unexpected Death in Epilepsy and affects approximately 1 in 1000 people with the disorder.

a call for education.

During the 21st Century, there has been an increase in awareness and understanding of medical conditions and illnesses across society. So why is there an underlying ignorance when discussing an illness as diverse and severe as epilepsy? Mental health and well-being are now a major part of school systems. However, there seems to be an absence of discussion regarding illnesses like epilepsy.

Results of a survey created as research for this article indicate that although 100% knew what epilepsy is, 85% did not recall the topic being discussed in their schools. Only 52.5% of the survey participants would know what to do if somebody was having a seizure, and just 35% know about the different types of epilepsy and seizures.

the importance of raising awareness.

There are many reasons why there should be greater awareness and education of epilepsy. As the condition can be developed by anybody and there are no physical signs of the illness, it is crucial that there is some sort of basic understanding across society. When somebody has a seizure, it is a terrifying experience – both for the individual with epilepsy and the people witnessing it. If there is a basic knowledge of what to do when somebody has a seizure, the experience becomes less frightening. This enables the individual to come around from the seizure in a calm and safe environment.

Additionally, epilepsy has a detrimental effect on your mental health. It is common for individuals to feel a sense of loss or major restriction once they have been diagnosed with epilepsy, as it is such a life-changing condition. Often anxiety and depression go hand-in-hand with epilepsy due to it having such restrictions on your life and the fear of losing control over your body at any point in time. Enuresis is a possibility during seizures, which can be challenging to deal with, especially during school in front of classmates. Understanding your peers and being surrounded by people who are comfortable and supportive of a condition like epilepsy can make all the difference in overcoming any mental health difficulties related to the illness.

Puberty and a change in hormones can trigger seizures in young people. The NHS states, “Around one child in every 200 has epilepsy, and while some will grow out of it, others won’t”. Similarly, in 2013 the National Institute of Clinical Excellence (NICE) estimated that “there were approximately 34,000 young people under 18 with a diagnosis of epilepsy and taking anti-epileptic drugs in England”. This shows the importance of the education and awareness of epilepsy. It affects so many young people across our country. We need a much wider understanding of the condition throughout our society.

Raising awareness is beneficial for an individual with epilepsy. Still, it makes the people witnessing or helping with a seizure more comfortable. Three girls in my younger brother’s class cried when he had his first fit. The teacher was not equipped with the knowledge to deal with a seizure. Knowing what to do when somebody is having a seizure creates a calmer and safer environment.

So please, be interested in this complex condition. Familiarise yourself with a basic understanding of epilepsy, and it will have a positive impact on so many lives.

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