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Facebook post highlights misunderstandings around epilepsy

Created:

19 August 2016

Our channel marketing manager, Carl Charlesworth, discusses how one post on Epilepsy Society's Facebook page highlighted how hard it really is to live with epilepsy. 

What one thing do you wish more people knew about epilepsy?

On Monday, 15 August we asked supporters on Facebook, "what one thing do you wish more people knew about epilepsy?". The response was unexpected and overwhelming.

After day one we had 100 comments. On day two we had around 200 comments and by the end of day three we had just under 300 comments on the post!

While the amount of comments we had was surprising, it was the content of the comments which really highlighted the misunderstanding that surround seizures and epilepsy.

Here are seven key themes that particularly stood out:

1. There's a range of different seizures. Not all seizures are tonic clonic (convulsive) seizures
2. The recovery time and triggers for seizures can vary from person to person
3. Photosensitive epilepsy only affects around 3 per cent of people with epilepsy
4. Even if someone isn't having seizures, epilepsy can still have an impact on a person's general health as a result of the condition and side effects from the medication
5. Epilepsy can affect a person at any stage of life and at any age
6. First aid is vital so that people know exactly what to do when someone has a seizure. This includes knowing what steps to take and how to put someone into the recovery position 
7. Epilepsy can involve memory loss and confusion, whether or not a person is having a seizure

Find out more about epilepsy including causes of epilepsy, epilepsy facts and risks from epilepsy and seizures.

On Thursday 18 August we asked our supporters on Facebook a very simple question: 'what do your seizures feel like?' The response we got was far from simple.