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International Epilepsy Day, rare epilepsy and examples.

Writer: Roberto CastilloRoberto Castillo
Feb 103 min read

The second Monday of every February since 2015, International Epilepsy Day is an annual awareness-raising initiative organised by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE).


This was started to raise awareness whilst working towards removing the stigma and discrimination that can be associated with epilepsy, as many people and their families suffer worldwide. The initiative should mean those with epilepsy have better access to care, increased social inclusion across all areas of society in line with their human rights.


MRI scan
MRI SCAN

So what exactly is Epilepsy?

Epilepsy is a common condition that affects the brain and causes frequent seizures.


Seizures are bursts of electrical activity in the brain that temporarily affects how it works. In most cases it is not clear why this happens. It is possible that it can be partly caused by genes, as 1 in 3 people with epilepsy have a family member with it.


According to WHO (World health organisation) around 50 million people globally have epilepsy making it one of the most common neurological diseases.


When can it start?

The offset or start of seizures can vary and appear at any age, as it is overall due to individual circumstances. Many are diagnosed within childhood, with causes such as genetic, strokes, brain tumours, severe head injuries, and brain infection, however drug or alcohol abuse, or general aging of the body may also be a factor in addition to the above.


Rare epilepsy and examples

A rare epilepsy is a type of epilepsy that occurs in a small number of people but can affect the individual and their family in many ways. Rare epilepsies usually have very difficult to control seizures and the term refractory epilepsy is used. Often multiple seizure medicines may be needed. Other treatments such as dietary therapy, a device, or surgery may be options for some people.


The cause of many rare epilepsies is unknown. Increasingly knowledge is increasing about genetic factors that may affect brain development, metabolic disorders or a condition that affects how the brain works, or a problem in the structure of the brain or how it looks. Sometimes there may be multiple causes.


Here are only a handful of examples:


  • CDKL5 Deficiency Disorder

  • Dravet Syndrome

  • Fragile X Syndrome

  • Lennox-Gastaut syndrome (LGS)

  • Nascimento X-linked Syndrome


Different types of possible seizures


Simple partial (focal) can cause the following -

  • tingling in the arms and legs

  • unusual smells or tastes

    intense feeling of fear or joy

  • stiffness or twitching in part of the body

  • the person is awake and aware when this happens. These are sometimes known as warnings because they can be a sign another type of seizure is about to happen.


Complex partial (focal) can cause the following -

  • making random noises

  • rubbing of hands

  • smacking of lips

  • chewing or swallowing

  • moving the arms around

  • the person loses their sense of awareness and is unable to respond to anyone during the seizure and will not have any memory of it.


Tonic-clonic (aka grand mal) can cause the following -

  • it happens in two stages

  • the tonic stage is when the person loses consciousness, their body stiffens and they may fall to the floor

  • the clonic stage is when person's limbs jerk about, they may lose control of their bladder or bowel, may bite their tongue or inside cheek and may have difficulty breathing

  • they usually last a few minutes sometimes longer, and the person may have a headache and feel confused afterward

  • most people think of this as a typical epileptic fit.


Absence (aka petit mal) can cause the following -

  • usually only last 15 seconds and can happen multiple times a day without any memory of them

  • mainly affects children but can occur at any age

  • staring blankly into space

  • flutter their eyes

  • look like they are day dreaming

  • may make slight jerking movements with their limbs.


Myo-clonic can cause the following -

  • some or all of the body suddenly twitches or jerks

  • often occurs soon after waking up

  • usually only last a fraction of a second, but several may happen in a short space of time

  • the person is normally still awake.


Atonic can cause the following -

  • causes all the muscles to relax, so the person may fall to the ground

  • usually are very brief and the person can get back up straight away.


Status epilepticus is the name given to any seizure that lasts a long time or a series of seizures where the person does not regain consciousness in between. This is then a medical emergency that needs to be treated asap.








 
 

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