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Epilepsy

Epilepsy shows up through seizures that occur when the electrical activity of the brain races momentarily. Contrary to the widespread image, not all seizures are spectacular: some come down to an absence of a few seconds, a fixed stare or a series of automatic movements.

Between seizures, the person with epilepsy most often leads an ordinary life, provided they cope with a degree of unpredictability. Fatigue, lack of sleep or intense stress can favour a seizure, which calls for a discreet but constant vigilance.

A seizure sometimes lasts less than a minute. What follows can last much longer: hours of confusion, heavy fatigue, a floating memory, a need to recover in a calm place. It is this discreet part that a person with epilepsy goes through, often long after those around have believed the episode over.

Having to explain each time what to do during a seizure, and above all what not to do, weighs as much as the seizure itself. Being able to pass on these few clear instructions once reassures everyone and spares the person from having to explain themselves again at each new encounter.

Understanding what really happens

A seizure is neither a choice nor a sign of weakness: it is a momentary and uncontrollable racing of the brain's activity. The forms are very varied, and many stay barely visible to those around.

  • Brief absences, where the person seems to switch off for a few seconds.
  • Seizures with involuntary movements, sometimes striking but most often without lasting danger.
  • A recovery phase after the seizure, marked by confusion and fatigue.
  • Triggers known to the person: lack of sleep, stress, sometimes certain lights.

What helps, during and around seizures

Knowing how to react simply is enough in the vast majority of situations. The point is mainly to avoid pointless gestures and to let the person recover.

  • Staying calm, protecting the head, moving dangerous objects away and putting nothing in the mouth.
  • Noting the duration of the seizure and allowing real rest time afterwards.
  • Respecting sleep and the reference points that limit triggers.
Key figures

Epilepsy in a few figures

  • ~ 1,2 %of the US population lives with active epilepsy, about 3 million adults and 470 000 children.Source: CDC.
  • ~ 633 000people in the UK have epilepsy, about 1 in 100.Source: Epilepsy Action UK.
  • ~ 50 millionpeople worldwide have epilepsy, making it one of the most common neurological conditions.Source: WHO.
  • ~ 70 %of people can become seizure-free with appropriate treatment.Source: WHO ; Epilepsy Foundation US.
  • ~ Halfof cases have no identifiable cause despite full investigation.Source: NIH.

Possible accommodations

The adjustments rest on preventing triggers and on clear instructions, known in advance.

  • At school: a PAI (an individualised care plan for a health condition, in France) or a PPS (an individualised schooling plan, in France) can set out what to do in case of a seizure, provide for rest time and adjustments after a seizure; an AESH (a teaching assistant for students with disabilities, in France) can provide support if needed.
  • At work: RQTH (official recognition of disability status, in France), via the MDPH (the local disability office), makes it possible to adapt hours, avoid high-risk roles and plan breaks to protect sleep and limit fatigue.
  • In daily life: a regular sleep rhythm, managing stress and sharing the right reflexes with those around reduce the worry tied to unpredictability.

Explanations based on your profile

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Epilepsy explained to a Child

0–12 years old

Epilepsy is when the brain gets worked up now and then, a bit like a computer that "glitches." Because of this, the body can do strange things: move without meaning to, stop responding for a few seconds, or stare into space.

When this happens (it's called a seizure), there's no need to be scared. It's not contagious and it doesn't hurt the person. The best thing to do is to stay near them, stay calm and wait for it to pass.

Children with epilepsy often feel very tired afterward, like when you play for a very long time without resting. You have to watch out for what can trigger seizures: too little sleep, too much flashing light, or being very stressed.

Real cases: Epilepsy

use case

Child with West syndrome (epilepsy), 5 years old
Parent → Childminder, babysitter
The person looking after the child can recognize a seizure and knows what to do, without a panicked call to the parents.

QR location: Label in the school bag, card at the childminder's

Adult with epilepsy (silent seizures)
The person themselves → First responder, passerby, emergency doctor
In case of a seizure, someone can access the instructions and warnings chosen by the person, without sharing them in everyday life.

QR location: Card in the wallet / back of the phone

See the case in detail
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