Epilepsy facts and terminology

Epilepsy is one of the most common neurological conditions in the world. Approximately 1 in 97 people live with epilepsy in Scotland, that’s around 55,000 people.

 

Epilepsy facts

  • Epilepsy is defined as the tendency to have repeated seizures which start in the brain.

 

  • Epilepsy can affect anyone, at any age and from any walk of life.

 

  • No two people experience epilepsy in exactly the same way. For one person, epilepsy can mean complete seizure control on medication. For another, it can mean uncontrolled and frequent seizures despite medication.

 

  • A diagnosis of epilepsy can have life-changing consequences. These can include the loss of a driving licence, reduced independence, and disruption to employment. It can also affect someone’s education and employment prospects, and lead to an increased degree of social isolation and depression.

 

  • A seizure is a sign of temporary disruption to the brain’s electrical activity. If there is excessive electrical activity in the brain it can cause a seizure.

 

  • There are around 60 different types of seizures and epilepsy syndromes, and a person can experience more than one type. Seizures vary depending on where in the brain they are happening. Some people remain aware throughout, while others can lose consciousness.

 

  • Seizures are generally divided into two main types, focal seizures and generalised seizures.

 

  • Focal seizures only affect one part of the brain. People can experience focal seizures with full awareness or limited awareness.

 

  • Generalised seizures usually affect the whole of the brain and will cause loss of consciousness, even if for just a fraction of a second.

 

  • Many people recover from a seizure within an hour, but it can take some people several hours, sometimes even days before they feel back to normal again.

 

  • As many as one in 20 people will have a one-off seizure in their life. However, this does not mean they have epilepsy.

 

  • Photosensitive epilepsy only affects 2-3% of people with epilepsy. With this type of epilepsy, seizures are triggered by flashing or flickering lights, or some repetitive or fast moving patterns.

 

  • Unfortunately, a small number of people die from epilepsy each year in Scotland. If there is no obvious cause of death, the term Sudden Unexpected Death in Epilepsy (SUDEP) is used. It is often unwitnessed and happens overnight.

 

Suggested terminology

  • People do not want to be defined by their condition, like calling someone ‘epileptic’. It is important to see the person and not the medical condition, it is more helpful to say ‘a person with epilepsy’.

 

  • The term ‘seizure’ or ‘epileptic seizure’ is preferred by many people, and episodes should not be referred to as a ‘fit’.

 

  • Epilepsy is a condition. It is not an illness.

 

  • A ‘victim’ or ‘sufferer’ implies someone is helpless and this is not helpful language when describing people with epilepsy.  We prefer to say a ‘person affected by or living with epilepsy’.

 

  • Grand mal seizures are now called tonic-clonic seizures.

 

  • Petit mal seizures are now called absence seizures.