Why Leeann can no longer smile

Leeann has broken or damaged her teeth so many times during a seizure, that she is afraid to smile, say "hello", or leave the house. Now, after years of repetitive injuries, she is asking why people with epilepsy are not entitled to financial support to get their teeth repaired.

Leeann first experienced seizures in 2010. Before this she was bubbly and outgoing. Today she is scared to leave the house. Her epilepsy has led to her teeth being broken and cracked. And she says dentists, doctors, and epilepsy nurses have not known what to do. She cannot afford to get her teeth repaired. And her injuries have left her increasingly isolated and depressed. 

“I’m afraid to say hello”

Since her first seizure Leeann’s teeth have been ground down, chipped, and cracked. The pain has stopped her from eating properly and she has been forced to blend her food. Her tongue is cut, and her jaw constantly aches. At times the seizures are so bad that her partner, Debi, says you can hear the teeth break. 

“Leeann sometimes wakes up spitting out bits of her teeth. Every morning starts with worry, with fear about what will happen that day, what people might say or think.,” says Debi.

“She is always reaching up to touch her teeth, checking to see if they’re still there.”

These nervous movements are a reminder of the constant worry that follows Leeann around. This fear has driven her to avoid other people. She does not want to go to the shops or open the door; she even dreads seeing someone she knows. “I am afraid to say hello,” says Leeann. 

Everyday actions people take for granted are challenges for Leeann. She has missed out on Christmases, birthdays, and even her own daughter’s communion because of her fear about her how her teeth might look. 

The depression that has come from this anxiety, isolation, and constant worry has driven her to attempt to take her own life. 

“A smile is something you need every day”

Debi continues: “Leeann has sought help from dentists, doctors, and nurses, but each time she has been met with confusion. No-one seems able to see how her epilepsy relates to her teeth, nor where to find help. The costs of repairing her teeth are beyond anything Leeann could afford. When she has new fillings, they fall out.” 

Leeann’s dental problems have left her feeling alone and without a way forward. So now Debi has reached out to the Epilepsy Society for help. 

“We just want Leeann to have the confidence to be the friendly, outgoing person we know she is,” says Debi. “But there are times, after her seizures, when she will not recognise those closest to her or her own home.”  

“A smile is something you need everyday," says Leeann. "I would, honestly, rather break a bone each time I had a seizure than this.”

Leeann wants medical and dental practitioners to have a better knowledge of how to help those whose teeth are damaged. And she says those with epilepsy need not only medical support but financial support for the harm that is caused. She wants this, not just for herself, but also for others like her who also suffer from broken teeth and isolation.

Tell us about your experience

Have you experienced problems with dental care or with repairs to spectacles, caused by repeated seizures. How is this impacting your life? We would like to know more about the challenges you face and whether you feel there is enough support for people with epilepsy whose seizures result in dental injuries and broken glasses. 
Please let us know by emailing press.office@epilepsysociety.orguk

What help is available

Currently, everyone has the right to have dental treatment on the NHS, where their dentist deems it "clinically necessary." There is no exemption from dental fees due to epilepsy, although some people – those on a low income, for example – may receive treatment for free. You may also be entitled to free dental care if you are under 18, pregnant or have had a baby in the last year, or if you receive Universal Credit payments.

To access this treatment, you will need to register with an NHS dentist. If you have trouble finding a dentist that accepts NHS patients, you can call NHS England's customer service number 0300 311 2233 for help. It is important that you tell your dentist that you have epilepsy and which medicines you take, even if you are seizure free, as this will help them to make the most appropriate decisions relating to your treatment.