Video: Model has a seizure live on Instagram to show the reality of living with epilepsy

Sophie Wilson-Smith uploaded the candid footage in a bid to show what it’s like to live with having focal seizures.

A model bravely uploaded a live video of herself having a seizure to Instagram, in a bid to show the stark reality of living with epilepsy.

Masters degree student Sophie Wilson-Smith, 24, of north London, had no idea she even had the condition until one day in April 2017 when, completely out of the blue, she suffered a terrifying episode while at work, then in retail.

A barrage of tests followed until the summer of 2018, when she was officially diagnosed with epilepsy – a neurological condition causing seizures, due to a sudden burst of intense electrical activity in the brain.

Keen to show how varied seizures can be, Sophie, who is studying Veterinary Epidemiology and Public Health at London School of Hygiene and Tropical Medicine and the Royal Veterinary College, then posted candid footage online of herself having a focal seizure, showing she is conscious and aware, but disorientated.

She said: “The video was like a therapy for me, a way of educating others on the mental aspect of having to deal with this.

“Lots of people don’t realise there are different types of seizure. It’s not always the typical fit you see on TV, where a person is on the ground shaking. The ones I experience are almost unnoticeable, yet I’ll be freaking out inside. It can make you feel very alone.”

Sophie is now working alongside the charity Epilepsy Action (PA Real Life/Collect)

Until her first seizure, Sophie, who has a zoology degree from Anglia Ruskin University, was the picture of health, juggling modelling with a part-time retail job and studying for her exams.

Remembering the day in April 2017 she said: “My memory of it is very hazy, but I can only describe the symptoms as being migraine-like, just without the headache.

“I said to my friend, ‘I really don’t feel well. Something is wrong.’ Apparently, as I spoke, I just went completely blank. Next thing I knew, I was surrounded by paramedics.”

Sophie (PA Real Life/Brian Venth/VENTHstudios.co.uk)

After being checked over at hospital, Sophie was initially told she had probably had a hemiplegic migraine, where one side of the body becomes temporarily paralysed.

But in the throes of a focal seizure, a person may also experience speech difficulties, vision problems or confusion.

Sophie continued: “I didn’t fit the typical epilepsy symptoms, so it took a long time to be properly diagnosed, but the medication I was given didn’t help me.”

Sophie bravely shared her video to show the realities of living with epilepsy (PA Real Life/Collect)

She continued: “Over the course of a year, I was having more and more focal seizures.

“Doctors were convinced they were hemiplegic migraines, but I didn’t agree. It was incredibly frustrating, and I ended up feeling down and depressed.

“Life was changing so much for me, and yet nobody seemed to understand.”

At her lowest ebb, Sophie was having around five seizures a month and could feel symptoms building up for days on end before they happened.

Describing the onset of a seizure, she said: “I’ll feel this uncomfortable, almost anxious feeling in my stomach, before the room gets bigger and smaller. My vision will feel odd, and my hearing is as if someone has their hands over my ears. Afterwards, I’ll feel really disorientated and upset.”

Eventually, Sophie even began to dread going out in case one happened in public.

Sophie hopes that by sharing her story, she will help raise awareness of epilepsy (PA Real Life/Collect)

She continued: “It’s something I still struggle with now. I worry people will stare and judge if I have an episode in public.

“I remember being on the Tube in London once when I felt a seizure coming. I explained what was happening and asked for a seat and this person just started at me, without moving. I ended up having one standing up, and on that packed carriage, only one person asked if I was okay.”

At the end of 2017, Sophie was forced to quit her retail job, as the stress of juggling everything was making her symptoms worse.

Sophie has received an outpouring of support since uploading her video (PA Real Life/Collect)

Finally, in summer 2018, she met with a specialist at Addenbrooke’s Hospital in Cambridge, where she was officially diagnosed with epilepsy.

“I’d come to terms with the fact that something more than originally thought was wrong with me,” said Sophie, who is now working with the charity Epilepsy Action. “While it wasn’t nice to hear, it was a relief to finally have a diagnosis.

“My specialist was amazing. He put me on a course of medicine right away, which took a couple of weeks to kick in, but has been great. It’s a long road to see if this will be a long-term solution, and I’ve had to up my dosage twice, but I feel very grateful for now.”

Sophie had her first seizure completely out the blue in April 2017 (PA Real Life/Collect)

She added: “Before, the tiniest bit of stress, tiredness or even being on my period would trigger me – but now, my episodes are few and far between.”

During a seizure around three months ago, as her medication was still kicking in, Sophie made the bold decision to film what was happening, uploading the poignant snapshot to Instagram.

Although nervous as to how people would react, she was hit with a wave of support, receiving messages off strangers from around the globe.

Now, by speaking out, she hopes she will educate people on the invisible side of epilepsy – and show others living with it that they are not alone.

She said: “Of course, everyone is different, but personally, when I’m in a seizure, I need people to remain calm, sit with me and wait, helping me come back down. There’s nothing worse than someone panicking, shouting and shaking you.

“Everyone should inform themselves about epilepsy, as it can happen to absolutely anybody. It just hit me out of the blue, and we’re all still trying to work out why.”

Sophie bravely shared her video to show the realities of living with epilepsy (PA Real Life/Collect)

She continued: “What people like me need is as much kindness and understanding as possible. Judgement doesn’t help anybody.

“To others with epilepsy, I want to also say how important it is to speak up if you don’t feel well. You may feel afraid or worry about being a burden but you aren’t – and your health is so important.”

For information, visit www.epilepsy.org.uk/info/seizures/focal-seizures

BOSTON (AP) — Massachusetts' highest court heard oral arguments Friday in the state's lawsuit arguing that Meta designed features on Facebook and Instagram to make them addictive to young users.

The lawsuit, filed in 2024 by Attorney General Andrea Campbell, alleges that Meta did this to make a profit and that its actions affected hundreds of thousands of teenagers in Massachusetts who use the social media platforms.

“We are making claims based only on the tools that Meta has developed because its own research shows they encourage addiction to the platform in a variety of ways,” said State Solicitor David Kravitz, adding that the state's claim has nothing to do the company's algorithms or failure to moderate content.

Meta said Friday that it strongly disagrees with the allegations and is “confident the evidence will show our longstanding commitment to supporting young people.” Its attorney, Mark Mosier, argued in court that the lawsuit “would impose liabilities for performing traditional publishing functions” and that its actions are protected by the First Amendment.

“The Commonwealth would have a better chance of getting around the First Amendment if they alleged that the speech was false or fraudulent,” Mosier said. “But when they acknowledge that its truthful that brings it in the heart of the First Amendment.”

Several of the judges, though, seem to more concerned about Meta's functions such as notifications than the content on its platforms.

“I didn't understand the claims to be that Meta is relaying false information vis-a-vis the notifications but that it has created an algorithm of incessant notifications ... designed so as to feed into the fear of missing out, fomo, that teenagers generally have,” Justice Dalila Wendland said. “That is the basis of the claim.”

Justice Scott Kafker challenged the notion that this was all about a choose to publish certain information by Meta.

“It's not how to publish but how to attract you to the information,” he said. “It's about how to attract the eyeballs. It's indifferent the content, right. It doesn't care if it's Thomas Paine's ‘Common Sense’ or nonsense. It's totally focused on getting you to look at it."

Meta is facing federal and state lawsuits claiming it knowingly designed features — such as constant notifications and the ability to scroll endlessly — that addict children.

In 2023, 33 states filed a joint lawsuit against the Menlo Park, California-based tech giant claiming that Meta routinely collects data on children under 13 without their parents’ consent, in violation of federal law. In addition, states including Massachusetts filed their own lawsuits in state courts over addictive features and other harms to children.

Newspaper reports, first by The Wall Street Journal in the fall of 2021, found that the company knew about the harms Instagram can cause teenagers — especially teen girls — when it comes to mental health and body image issues. One internal study cited 13.5% of teen girls saying Instagram makes thoughts of suicide worse and 17% of teen girls saying it makes eating disorders worse.

Critics say Meta hasn't done enough to address concerns about teen safety and mental health on its platforms. A report from former employee and whistleblower Arturo Bejar and four nonprofit groups this year said Meta has chosen not to take “real steps” to address safety concerns, “opting instead for splashy headlines about new tools for parents and Instagram Teen Accounts for underage users.”

Meta said the report misrepresented its efforts on teen safety.

Associated Press reporter Barbara Ortutay in Oakland, California, contributed to this report.

FILE - Attendees visit the Meta booth at the Game Developers Conference 2023 in San Francisco on March 22, 2023. (AP Photo/Jeff Chiu, File)