About Epilepsy - Epilepsy Warriors Foundation

Epilepsy is a chronic non communicable disease of the brain that affects more than 50 million people worldwide. It is characterized by recurrent seizures, which are brief episodes of involuntary movement that may involve a part of the body (partial) or the entire body (generalized) and are sometimes accompanied by loss of consciousness and control of bowel or bladder function.

Seizure episodes are a result of excessive electrical discharges in a group of brain cells. Different parts of the brain can be the site of such discharges. Seizures can vary from the briefest lapses of attention or muscle jerks to severe and prolonged convulsions. Seizures can also vary in frequency, from less than 1 per year to several per day.

One seizure does not signify epilepsy (up to 10% of people worldwide have one seizure during their lifetime). Epilepsy is defined as having two or more unprovoked seizures. Epilepsy is one of the world’s oldest recognized conditions, with written records dating back to 4000 BC.

Fear, misunderstanding, discrimination and social stigma have surrounded epilepsy for centuries. This stigma continues in many countries today and can impact on the quality of life for people with the disease and their families.

Facts about Epilepsy

Epilepsy is a tendency to have recurring seizures.
Epilepsy can affect anyone. Any age, any background, any level of intelligence.
Epilepsy in not contagious.
There are many different seizure types and seizure syndromes. Epilepsy is not just one condition; there are many forms of epilepsy.
Most people with epilepsy can live a perfectly normal life and do most things everyone else can do, with the help of simple safety measures where appropriate.

Terminology and labels to be avoided that may help reduce stigma:

Disorder- epilepsy is a disease, not a disorder.
Illness- epilepsy is a neurological condition, not an illness.
Fit- the term seizure is preferred. There are many different types of seizures. A convulsion is a term for a seizure involving stiffening and jerking of the body. ‘Fit’ implies willful outbursts, like a ‘tantrum’, or loss of emotional control.
Victim or sufferer – this implies someone who is helpless. Most people with epilepsy want your understanding, but not your pity.
Epileptic – the person is a human being first, a person with epilepsy second. A person with epilepsy is a more appropriate term to use. Like most of us, people with epilepsy dislike labels. These feelings can be explained by the phrase ‘epilepsy is what I have, not who I am

First Aid for Seizures

Most Seizures are self -limiting and will stop on their own. Knowing simple first aid steps can help keep a person safe during and after a seizure.

First aid for tonic-clonic seizures

A person will stiffen during a tonic-clonic seizure. This is called tonic stage. If the person is standing they will fall and their breathing temporarily stops.
The next stage is the conic stage where the person starts to jerk. They may make a grunting noise, produce a lot of saliva, bite their tongue and/or empty their bladder and/or bowels. The jerking stops after a couple of minutes.
Because the breathing is affected during a tonic-clonic seizure the skin can become pale and the lips may go blue. Once the seizure has stopped the breathing returns and the color will return to normal. The person will come around slowly. They May feel sleepy and confused afterwards. Some people have a headache or sore arms and legs. It can take time to feel well again.

Signs that a tonic-clonic seizure has stopped are:

Jerking stops

Breathing returns to normal

Color returns

What to do if someone has a tonic-clonic seizure?

Procedure

Once a seizure starts it will usually stop on its own.
Keep calm
Check the time to see how long the seizure lasts
Move any objects that could cause injury
Put something soft like a rolled-up jacket or cushion under the persons head to prevent injury
Maintain the person’s airway by wiping away any vomit or saliva, and/or tilting the head slightly backwards (this can usually only be done after convulsions have stopped)
Loosen tight clothing around the neck
Remove glasses
Stop other people crowding around
Check for medical identification as this may have more information on the persons epilepsy
Turn the person onto their side into the recovery position as soon as the jerking stops
Protect the persons privacy, particularly if they have emptied their bladder and/or bowels
Speak softly and gently when you tell the person what has happened
Remember they may be confused after a seizure

Some people with epilepsy will have a care plan or epilepsy profile. This will have detailed information about their seizures and information on how best to support the person. You can refer to this during a seizure

Do not move the person unless they are in danger, eg on a busy road or at the top of stairs

Do not try to stop the jerking or restrain the person

Do not put anything in the person’s mouth or between their teeth

Do not offer the person anything to eat or drink until they are fully conscious

When to call an ambulance or rush the person to the nearest hospital

This is the persons first seizure as far as you are aware
The person has injured themselves beyond first aid
You suspect they may have inhaled food or liquid
The jerking lasts for five minutes or a longer time than is usual for that person
One seizure follows another with no recovery time in between
The person is having problems breathing after the seizure

Treatment

There is no known cure for epilepsy, developments in treatment have made it possible for most people to achieve seizure control. The first treatment step is usually to find the right medicine or Anti-Seizure Medication (ASM).

There are different Anti-seizure medication that can stop or prevent seizures. Anti-seizure medications successfully control seizures for about 70% of people with epilepsy.