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Sophie's story

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15 April 2019

Sophie Harries, 22, is a dietitian from Somerset. She was  diagnosed with photosensitive epilepsy at the age of 15. She explains how it affects her life.

"When I was first diagnosed with photosensitive epilepsy, social media wasn't as big as it is now, so it wasn't such a problem for me. Once I went to uni I had to be careful to avoid strobe lighting so couldn't go out clubbing with my friends.

"That is still the case, but now  I have to be careful of any videos uploaded to social media that contain strobe lighting or flashing imagery. The videos tend to play automatically putting me at risk of a seizure. If my friends have been out clubbing I have to avoid social media for a while.

"But so much of the shared content can cause a problem. There was a recent trailer for a film which contained flashing lights. I reported it to Instagram but they just said it wasn't breaching their current terms of usage.

"You can un-follow posts but they still tend to follow you around. For a 15 year old today it is an absolute minefield. Young people are permanently on social media with friendship groups. It is their way of finding out who they are. If I was 15 years old today and just diagnosed with photosensitive epilepsy, I would have to avoid social media altogether or risk lots of seizures."

The views expressed here are those of the author and not necessarily those of Epilepsy Society.

Learn more about photosensitive epilepsy.

Learn more about how Epilepsy Society is safeguarding people from online harms.

 

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