Supporting people with epilepsy

Experts at Guy's and St Thomas' are dispelling myths about epilepsy in order to raise awareness of a condition that affects half a million people in the UK.

Epilepsy is a neurological disorder that causes repeated seizures because of sudden bursts of electrical activity in the brain. Most people with epilepsy can control the condition with medication but some need other treatment like surgery.

Marie Synott-Wells, advanced nurse practitioner for epilepsy at Guy’s and St Thomas’, says: "Once diagnosed and with the right medication, seizures can be controlled so that people with epilepsy go on to have a good quality of life."

"Epilepsy is a condition that may cause fear and anxiety because it's not well understood. Some people may think of it as fits, that it is contagious or only affects children. People with epilepsy may experience stigma and feel isolated and depressed.

"I want my patients to know that no question is unreasonable, that we will listen and are here to support them."

Emily-Kate Skehan, 19, from London Bridge, has had epilepsy since birth and has already experienced five seizures this year.

She says: “I never know when a seizure is coming. I’ve been told that my whole body stiffens, my eyes roll back and I start shaking. I become unconscious, bite my tongue and sometimes wet myself.

“Marie has been fantastic. When I’m feeling down or struggling to cope, I know I can email or text her and that she'll get back to me that day. She put me in touch with Janine Palm at Young Epilepsy who helped me get out of a hostel which was causing me extra stress.

“Young people with epilepsy shouldn’t feel embarrassed. It’s not their fault. There may not be a cure for everyone but there’s lots of support out there for you.”

Guy's and St Thomas' neurophysiology and epilepsies team help people to manage this lifelong condition by providing support with medication, counselling, education and signposting patients to other services like community teams and employment services.

Sunday 26 March is Purple Day to raise awareness of epilepsy. 

Guy's and St Thomas' is also helping patients with epilepsy outside of London, through the Vanguard partnership​ with Dartford and Gravesham NHS Trust.