Stevenage mum speaks out about loneliness of epilepsy as charity struggles to cope with demand for support

Ruth Bussey and her daughter Starla both have epilepsy. Picture: courtesy of Epilepsy Action.

Ruth Bussey and her daughter Starla both have epilepsy. Picture: courtesy of Epilepsy Action. - Credit: Archant

People with epilepsy are in danger of having nobody to turn to when they need expert and often life-changing aid, according to a charity which is hoping today’s Purple Day - the global awareness day for the condition - will help bolster support.

Ruth Bussey, 34, lives in Stevenage and was diagnosed with epilepsy at the age of five. Her nine-year-old daughter, Starla, also has the condition.

Ruth said: “Living with epilepsy is lonely, as so many people are ignorant about it. It doesn’t matter how many times you explain things, they will never understand.

“They will only see the seizures and not the other sides to this illness. They will never know the confusion post-seizure. They will never know the pain you feel in your head after a seizure or the pain from injuries. They will never know how difficult everything is with this condition.”

Around one in 100 people have epilsepy, but national charity Epilepsy Action says half of all calls to its helpline are missed due to increased demand and lack of funding.

It costs about £18 to answer an enquiry to the helpline and in 2017 the number of calls rose by six per cent.

Ruth said: “The Epilepsy Action helpline is a tremendous source of support and information. I recently emailed them to discuss how hard things have been and they gave me some very helpful pointers, always with the warmth of a friend.”

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Epilepsy Action’s chief executive, Philip Lee, said: “Our helpline is a vital resource for people, helping them to live well with epilepsy. It gives them the knowledge and confidence to seek better healthcare or help with their education or at work. It’s worrying people can’t get through to us when they have nowhere else to turn.

“Your support on Purple Day could lead to someone controlling their epilepsy, to loved ones knowing how to cope, and to more lives free from seizures.

“Please help us to be there for people when they need it most. It’s your call.”

To donate £5 to Epilepsy Action, text PURPLE to 70500. For more about Purple Day, visit or call 0113 210 8800.

The Epilepsy Action helpline is open Monday to Friday 8.30am to 6pm on freephone 0808 800 5050 or by emailing