Wiltshire teacher hopes for more education on 'invisible' epilepsy

It affects almost 1 in every 100 people across the UK

Author: Jack Deery and Matt HutchinsonPublished 30th Mar 2021
Last updated 30th Mar 2021

A teacher from Wiltshire, who has epilepsy, says raising awareness about the condition will help dispel the myths of its effects.

Since being diagnosed as a child, Claire Johnson has been attempting to control the symptoms by taking medication.

She's been speaking-out about the issue following 'Purple Day' last weekend, an event dedicated to improving the understanding of epilepsy worldwide.

'A better understanding of my own condition'

When Claire was first told that she had the condition in the 1970s, knowledge around it was limited.

"I was first diagnosed at about ten years-old, following my first tonic-clonic seizure - although I had unrecognised seizures up until then," she said.

"After my teens these were controlled. I am photosensitive, but now realise (through Epilepsy Action info) that my triggers are varied, including sleep, stress etc.

"I continue to have absences, myoclonic seizures ... but hardly suffer from these at all in recent years, due to a better understanding of my own condition".

Claire claims that it took her decades to fully come to terms with her epilepsy.

Describing the condition as "invisible", she says it can be difficult for people to empathise with its impacts.

Majority of Brits believe sufferers must 'be more positive'

Around 87 people are diagnosed with epilepsy in the UK every day. Despite being commonly known to cause seizures, the condition is often misunderstood.

According to research from the charity Epilepsy Action, 68% of Brits believe that those with health conditions simply need to be more positive.

Meanwhile, 21% incorrectly think that once sufferers get the correct medication, their epilepsy is largely cured.

The condition is often linked with flashing lights, however photosensitivity affects just 3% of those with epilepsy.

Other symptoms include:

  • Medicinal side effects
  • Mental health impacts
  • Memory problems
  • Absences

Epilepsy can also restrict other aspects of daily life, such as driving and alcohol consumption.

'I don't think we're quite there yet with epilepsy'

As the condition can affect people in many different ways, Claire is backing calls for children to be taught about epilepsy at school.

"I think we have got really good as teaching professionals at raising awareness of things like asthma and diabetes - and handling those within the classroom," she told Greatest Hits Radio.

"Little children will be very aware of: 'I'll go with my friend at lunchtime because they have to go and have their insulin jab' or whatever. This is commonplace and we all accept our different conditions.

"I don't think we're quite there yet with epilepsy".

More information can be found on the Epilepsy Action website.

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