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National Epilepsy Week: living with the condition, treatment and support

Posted: 21/05/2020

18 May to 24 May 2020 is National Epilepsy Week. Charities across the UK are raising awareness of epilepsy to highlight the effects the condition has on individuals and their families, as well as the support and treatment that is available to those who need it.

What is epilepsy?

Epilepsy is one of the most common central nervous system (neurological) conditions - affecting one in every hundred people in the UK.

Frequent and unprovoked seizures are the main sign of epilepsy, and these occur due to a burst of abnormal electrical activity in the brain that temporarily affects how it works. Symptoms could include:

  • temporary confusion;
  • a staring or ‘absent’ spell;
  • uncontrolled jerking movements; or
  • loss of consciousness or awareness.

Epilepsy can start at any age, but usually presents either in childhood (under the age of 20) or in those over the age of 60. The condition can be caused by an injury, infection or trauma to the brain that results in a structural change. However, it may also be genetic (ie inherited from one or both parents) or may be of completely unknown cause.

Not all individuals with epilepsy are affected in the same way, which makes it a ‘spectrum disorder’. The types of seizures can vary too: for example, not all seizures are convulsive (ie uncontrolled shaking or jerking). It is a common misconception that flashing lights will trigger an epileptic seizure, but it is actually the case that flashing lights only affect around three per cent of people with epilepsy (known as photosensitive epilepsy).

Seizures may be focal (affecting only part or one side of the brain) or generalised (affecting both sides of the brain). Epilepsy could last for a limited period of time; however for many it is a life-long condition to manage.

A single, one-off seizure is not enough to diagnose epilepsy. Those who have suffered at least two seizures may undergo different tests to aid diagnosis: either an electroencephalogram (EEG) or a magnetic resonance imaging (MRI) scan will be able to examine the brain and brain activity. Both are non-invasive procedures to measure electrical signals and patterns in the brain.

What should you do if someone is having a seizure?

It might be unsettling to witness someone having a seizure. If you need to assist the individual, you should not move them unless they are in immediate danger. Where possible, move objects and obstacles that could cause harm away from them and loosen any tight clothing around their neck to aid breathing. You should remember the three simple ‘C’s’:

  • Calm – stay with the individual, try to stay calm and take control of the situation.
  • Cushion – cushion the individual’s head with something soft.
  • Call – if the seizure lasts longer than five minutes, call an ambulance.

Living with epilepsy

Seventy per cent of those living with epilepsy effectively manage their seizures with anti-epileptic drugs. In these circumstances, a diagnosis of epilepsy may have little impact on lifestyle and a person’s ability to work.

Those diagnosed in childhood are often still able to attend mainstream school and take part in normal day-to-day activities and sports. Some children may suffer with learning difficulties; however, this is more likely to be attributable to underlying brain damage and dysfunction as opposed to epilepsy directly affecting a child’s development. Epilepsy is more common in individuals with a learning disability than in the general population, with those affected by more severe learning disabilities being the most pre-disposed.

One impact of having even a single seizure is the requirement to stop driving with immediate effect. If someone experiences a seizure, they must notify the Driver and Vehicle Licensing Agency (DVLA), regardless of whether they have been diagnosed with epilepsy or not. Depending on the diagnosis and whether the seizures are well controlled, a person may be able to resume driving again after one year of being seizure-free.

In severe cases where medication fails to keep the seizures under control, surgery may be required to remove the part of the brain that causes the seizures.

Lyndsey Banthorpe, an associate in the clinical negligence team at Penningtons Manches Cooper, said, “A diagnosis of epilepsy can be life-changing for individuals and their families, whether this occurs in childhood or later in life. It is important for anybody diagnosed with the condition to have access to the right advice and support: National Epilepsy Week aids this cause enormously through raising awareness of the condition, helping those affected and their friends and family to live with seizures, and raising money for important treatment.”

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