There are over 500,000 people with epilepsy in the UK alone, so why is there not a greater awareness of the condition?
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 upon 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 was having constant spikes. At school he was often told off for not concentrating or writing down homework and was labelled “one of the naughty kids”; when in fact, due to his neurological disorder, epilepsy, he was having constant miniature seizures and this is why he struggled in lessons.
The school took a proactive approach to my brother’s experience. They carried out a course on epilepsy, endeavouring to spread awareness of the illness across the teaching staff. However, this is something that has had a profound impact on my younger brother’s life and I wonder, if there had been a greater understanding of epilepsy in schools, 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 there is a sudden interruption to the brain’s neurones that 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 of their life. No matter your age, race or social class, you or a loved one could experience epilepsy. Current statistics show that there are 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 difficult 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% of the people 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.
One participant commented, “My school did not touch on epilepsy at all, all children should be educated on how to deal with epilepsy as it can help protect their friends or people they might meet in the future”.
Similarly, another participant shared, “I was never taught about it and it would of been helpful to know, but I taught myself how to handle it from the internet and NHS guidelines that I looked at”.
The importance of raising awareness
There are many reasons for why schools should raise 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 very scary 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 and an understanding of why this is happening, 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 an individual 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 difficult to deal with, especially if this happens during school in front of classmates. An understanding among your peers and being surrounded by people that 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 in schools, as it affects so many young people across our country.
Bringing in mandatory awareness and education of epilepsy within our education system would mean that this information would be shared with families at home. Before long there would be a much wider understanding of the condition throughout our society.
Information and courses that are available for schools
There are many epileptic charities that work to support research, provide information, and offer help and advice for coping with epilepsy. Epilepsy Action, Young Epilepsy and Epilepsy Connections are charities that offer a range of courses and lesson plans that were created to raise awareness and education of epilepsy in schools.
“A very short session can convey so much information about what epilepsy is, what seizures are, what things can people do and not do when a seizure happens, and it can then be addressed very easily,” said Colleen Wilson, the Education and Outreach Worker for the Schools Project at Epilepsy Connections. “If we can give people knowledge and information across communities, it can have a positive impact on lives.”
“In my generation, there is a stigma and negative concepts about it [epilepsy], but you can get rid of that with the generation that is coming up.”
Colleen Wilson, Education and Outreach Worker at Epilepsy Connections
Wilson’s role is to raise awareness of epilepsy in school communities in the Glasgow area. From April 2019 – March 2020, the Schools Project reached “914 primary and secondary school pupils; 360 primary school pupils (Assemblies); 18 Girl Guides group; 35 college students” and attended “3 x Curiosity Live events at Glasgow Science Centre”.
It is encouraging to see that there are such amazing projects in place to raise awareness of epilepsy. However, there is still a lot of work that needs to be done. Wilson shared concerns that available courses are usually sought once there has already been an epileptic incident within a school.
It is common for a child with epilepsy to be an “underachiever” and to be labelled a “naughty child” or “the cheeky one”, as the condition can have such diverse effects on an individual’s behaviour. This needs to be tackled. There should be a basic knowledge of epilepsy in place so that a school is already prepared to support and nurture an individual with epilepsy. This basic understanding throughout schools would mean that teachers could recognise these signs or symptoms before there are unmerited negative impacts on a child’s life.
Raising awareness is not only beneficial for an individual with epilepsy, but it makes the students and teachers of a school 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 atmosphere and less disruption to a school day.
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.
© Poppy Evans 20/05/2020
I wrote this article in May 2020 for a What’s the Story module. We were tasked with writing a 1,500-word individual story of our choice.
GRACEFULL REFLECTIONS 