The International Bureau for Epilepsy and the International League Against Epilepsy state that the lack of knowledge of epilepsy translates into social stigma and exclusion and leads to the discrimination of people across all levels of society, including at work, school or in the community.
This International Epilepsy Day, an annual initiative to raise awareness of epilepsy, the focus is on improving knowledge levels about epilepsy amongst all sectors of society and sharing the stories of people with epilepsy. As well as what it is, how it can be treated, and what is needed to bring treatment to all people who need it.
Alex’s epilepsy journey
Alex is a resident at Conifer Lodge, our adult learning disabilities service in Cambridgeshire, who has suffered with epilepsy since he was born. He said:
“Epilepsy affects my whole life. It frightens me knowing I can go a long time without a seizure and then suddenly end up in hospital. Seizures can be long and nasty, and some seizures are worse than others.”
“I can’t learn to drive or take my driving test. At first, I thought epilepsy ruined my life, but I have learnt to cope with it and medication is working well for me.”
One of Alex’s recent goals was to be able to take his medication on his own terms. Conifer Lodge and the epilepsy team have supported Alex and now he is able to take his medication in a way he prefers, such as in a yoghurt.
Alex is able to navigate his epilepsy with the help of the wonderful team at Conifer Lodge.
Improving knowledge of epilepsy
We spoke to Michael Dunn, our Epilepsy and Physical Health Nurse in the south, about the lack of knowledge surrounding epilepsy and the work that is being done in society to support those with epilepsy. He said:
“Sadly, social stigmas around epilepsy are still prevalent. These, like most discriminations, are due to lack of understanding or education. People are always quite surprised when they learn that one in 100 people have epilepsy, which translates to 50 million people worldwide, which is almost the same number as the entire population of England.
“Social stigma can only really be reduced through education and better understanding. While there are many high-profile people with epilepsy, it doesn’t attract the same interest as other conditions. People often think that epilepsy is something which only develops in children whereas, in fact, it can happen to anyone at any age.
“Apart from raising the profile of epilepsy being a common condition, there is more to be done on worldwide treatment of epilepsy. With the correct treatment, 70% of people with epilepsy can be “seizure free” which is amazing. In some areas of the world, lack of awareness prevents people seeking support, and in other areas, treatment just isn’t available.
“There are several UK and international charities which are undertaking fantastic work in supporting people with epilepsy, as well as looking at future treatment options. Over the last few years, they have helped raise awareness of epilepsy and many first aid providers now include guidance on how to help someone who is having a seizure, as part of their syllabus.”
If you would like to find out more about International Epilepsy Day, please visit their website.
For more information and resources on epilepsy, see below: