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How can the digital world help young people with epilepsy?

Image: Hamza Butt

Epilepsy Action Digital Media Manager Mark Morton talks about the different ways in which the digital world can offer young people living with epilepsy support

What is epilepsy?

­­­­­­­Epilepsy is a serious neurological condition that can affect anyone, at any age and from any walk of life. With epilepsy, there are around 60 different types of seizure and someone may have more than one type. Seizures vary depending on where in the brain they are happening. Some people remain aware throughout, while others may lose consciousness.

Who does it affect?

There are around 600,000 people living with epilepsy in the UK – around one in every 100 people – making it almost as prevalent as autism.  Epilepsy affects an estimated 63,400 children and young people aged under 18 in the UK. On average, there will be one child with epilepsy in every primary school and five in every secondary school. 

Epilepsy in a digital world

Epilepsy can feel isolating, especially for children at an age when they just want to fit in. But using digital media and finding support in the right places can help children to feel less defined, and isolated, by their condition. The internet can support your child with epilepsy, helping them to feel included, informed and even inspired.

Online resources for young people with epilepsy

National charity Epilepsy Action has spent years creating resources supporting children and parents. The website has specific sections for children with epilepsy, and for those whose parents have epilepsy. Stories are presented in an accessible way to help children understand a new diagnosis and many other aspects of dealing with an often confusingly variable condition.

Informative videos about epilepsy

The charity has also created special first aid videos to be shown in schools. Kids with epilepsy can find a wealth of advice on UK charity websites. Epilepsy Action has accessible, expert information on everything from first aid to seizure types and triggers and the latest treatment options. Parents and children can also get in touch with the charity’s helpline team by emailing questions to a team of advisers at helpline@epilepsy.org.uk.

Social media platforms

Social media can be a lifeline to young people who want to hear about other people’s experiences. Facebook, Instagram and Twitter are all awash with teens sharing everything from personal stories to fundraising ideas. Posting stories and pictures on Instagram can be a good way for teenagers to communicate. If they normally shy away from writing, social media can help them feel connected to a wider community. Including hashtags like #epilepsy #epilepsyawareness #epilepsywarrior will give their posts extra traction and appeal to others around the world going through similar issues.

Bloggers and vloggers with epilepsy

Bloggers and vloggers are hugely popular, with engaging posts to help people feel less alone.

Sixteen-year-old Lewis Hine, who has epilepsy, featured on television in 2017 organising a prom for other teenagers.

‘Missing school on a regular basis can make it hard to form and keep friendships, which inspired Lewis to create Friend Finder’

When their various conditions prevented them from going to their own school proms, Lewis’ determination ensured them exclusive access to an unforgettable milestone event. There are currently over one million children living with a long-term condition that requires time away from school. Missing school on a regular basis can make it hard to form and keep friendships, which inspired Lewis to create Friend Finder and bring those children together.

Other young Instagrammers and YouTubers have been equally inspiring. Katie Cooke from Dublin is 20 and runs even when she has a seizure halfway through training. Katie posted a film on YouTube channel Great Big Story, which has over 1.6 million subscribers, about how she runs despite falling unconscious 14 times a day. Katie’s three-minute film does more to raise awareness and smash myths of epilepsy than a newspaper article or medical journal ever could.

Further information

For more information about epilepsy and how to help your child visit www.epilepsy.org.uk. 

Watch this TED talk ‘Why I speak up about living with epilepsy’ Sitawa Wafula started Kenya’s first free mental health and epilepsy support line.

You can follow Lewis Hine on Twitter @hine-hin.

 

The advice published on Parent Info is provided by independent experts in their field and not necessarily the views of Parent Zone or CEOP.

First published: February 2018

 

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