It's a condition that links Julius Caesar, Vincent Van Gogh and Charles Dickens. Sadly, despite being one of the oldest recorded disorders, studies show that public understanding of epilepsy is poor. Our thanks to Professor Ley Sanders from Epilepsy Society for his contribution to this weeks report.
So what do you know about epilepsy? If the answer is not a lot - you are not alone - studies suggest that 1 in 3 of us have a poor understanding of the condition.
Greater public awareness, acceptance, understanding, what to do when someone is having a seizure and overcoming the stigma surrounding the condition are, according to epilepsy patient charities, amongst the biggest issues for people living with it.
Know the facts
- Epilepsy is not a disease or an illness, it’s not contagious, nor does living with epilepsy mean you are possessed by evil spirits.
- Having epilepsy does not make a person mentally handicapped.
- It is the most common serious neurological condition and can affect anyone at any time, regardless of age, colour or class.
- More than half a million people in the UK have epilepsy, which is around 1 in 100 people. It is ten times more common than multiple sclerosis and four times more common than asthma and diabetes.
- Anyone can develop epilepsy - it happens in all ages, races and social classes however it is most commonly diagnosed in children and people over 65.
- 1 in 20 people will have a single seizure at some time in their life – this does not mean they have epilepsy. 1 in 50 people will go on to develop epilepsy.
- Epilepsy is diagnosed on the basis of two or more epileptic seizures. A seizure is triggered by a sudden interruption in the brain’s highly complex electro-chemical activity.
- Everyone’s brain has the ability to produce a seizure, but in someone with epilepsy it could be that their brain has a low seizure resistance. Other causes are brain tumours, scarring on the brain because of head injury or stroke, or the result of an infection such as meningitis.
- There are many different types of seizure. Over 40 in fact - they vary from a tiny flutter of the eyelids or a momentary lapse in concentration (absences) to a full-blown convulsive seizure (tonic-clonic). So just knowing that a person ‘has epilepsy’ does not tell you very much about their epilepsy and the type of seizures they have.
- Once a diagnosis of epilepsy is made, a patient will be put onto anti-epileptic medication. This treatment can control seizures in up to 70% of patients.
- The most effective way of identifying the cause of a person’s epilepsy is by a Magnetic Resonance Imaging (MRI) scan. In some cases of epilepsy, where the cause can be identified by a scan, the affected area of the brain can be removed and the person can be entirely seizure-free with no serious side effects.
Studies show many of us do not know the basic first aid steps to take if they witness someone having a convulsive seizure which can result in many unnecessary ambulance call outs.
10 first aid steps when someone has a convulsive seizure These are general guidelines provided by the Epilepsy Society for what to do if someone has a convulsive seizure (where they shake or jerk)
- Stay calm.
- Look around - is the person in a dangerous place? If not, don't move them. Move objects like furniture away from them.
- Note the time the seizure starts.
- Stay with them. If they don't collapse but seem blank or confused, gently guide them away from any danger. Speak quietly and calmly.
- Cushion their head with something soft if they have collapsed to the ground.
- Don't hold them down.
- Don't put anything in their mouth.
- Check the time again - if a convulsive (shaking) seizure doesn't stop after 5 minutes, call for an ambulance.
- After the seizure has stopped, put them into the recovery position and check that their breathing is returning to normal. Gently check their mouth to see that nothing is blocking their airway such as food or false teeth. If their breathing sounds difficult after the seizure has stopped, call for an ambulance.
- Stay with them until they are fully recovered. If they are injured, or they have another seizure without recovering fully from the first seizure, call for an ambulance.
Support Organisations (click through links are highlighted in blue)
Epilepsy Society is the UK’s leading provider of epilepsy services.
Young Epilepsy works exclusively on behalf of the 112,000 children and young people aged 25 and under with epilepsy and associated conditions.
Epilepsy Action exists to improve the lives of everyone affected by the condition.
Epilepsy Research UK supports and promotes basic and clinical scientific research into the causes, treatments and prevention of epilepsy.