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Too scared to smile

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Too scared to smile: Toby's story

#FixIt4Free

Losing teeth due to a seizure can not only ruin a smile, it can risk ruining confidence too. In the latest in our #FixIt4Free personal stories, we learn how Toby's life changed after a series of seizures.

For Toby, it all started at a bus stop. The day had begun like any other: he’d woken up, got ready for work and headed out to catch a bus. But life was about to change.

As he stood waiting for the bus to arrive, Toby had a seizure. He fell on his face and blacked out. Worse was to come. He soon realised that several of his teeth had fallen out and that his whole jaw was in pain. What started as a simple, everyday commute soon became a very different kind of journey – a journey to find adequate and affordable dental care. Sadly, several years and many dental visits later, this journey shows no sign of reaching its destination.  

Toby post-seizure

Toby is a positive young man. At 26 years old, he loves hanging out with friends and is a regular at the gym. But even for an optimist like Toby, the unfairness of the situation is apparent.

Toby says: “My epilepsy is uncontrolled. It first started at university and I have tried different types of medication to treat it. One of the worst aspects of epilepsy for me has been the impact on my teeth. To be blunt: I feel screwed.

“I am angry that I am forced to pay for something – repairs to my damaged teeth – that I have no control over. My teeth are ruined. I don’t want my confidence to be ruined too.”

As a direct result of his seizures, Toby has lost his two upper front teeth; he’s chipped a tooth on either side of his mouth and his fillings regularly fall out. 

“I’ve been told that the gaps in my teeth are extremely noticeable”, says Toby. 

“It’s hard to speak clearly sometimes and I notice people also struggle understanding me. I won't smile at the moment around people as I'm scared.”

And since his seizure at the bus stop in 2021, Toby has found it ‘impossible’ to find an NHS dentist in his Hampshire community.

“Where I live there are very few NHS dentists so finding any to help me is impossible. I've lost several teeth and most of my fillings because of the seizures and I can’t afford to get them replaced. 

“The NHS won't offer to help pay to fix them and my research suggests it would cost almost £10,000 to go private. I am desperate.”

Toby post-seizure 2

What is FixIt4Free?

Simply put, we are calling for free dental repairs to teeth damaged by seizures.

We believe that people with epilepsy who have damaged their teeth due to seizures should not have to pay large sums of money for repairs. They have a medical condition, and we believe they should have this treatment for free. No costs, no rising fees. Just free treatment for medically caused damage.

Do you agree? 96 per cent of those who responded to our survey do.

Why not write to your MP, sign our petition, share our infographic on social media, read our personal stories and send us your own thoughts on free dental treatment.

You can reach out on Twitter, Facebook, Instagram or via campaigns@epilepsysociety.org.uk 

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