At three years old, Christopher had his first seizure, but it wasn't until further seizures when he was eight that a diagnosis of epilepsy was confirmed. At that time, he was undergoing great emotional stress, being separated from his parents for the first time as he began to attend boarding school. But the probable cause has been located further back in his life; scarred brain tissue on the left temporal lobe from meningitis contracted when he was just over 1 year old.
Christopher's seizures were of the fully convulsive (tonic-clonic) type, sometimes lasting for up to 10 minutes. On occasion he would go into status-epilepticus, a potentially life threatening state where seizure follows seizure with no break or recovery. Every day he would experience auras, that is, a kind of warning of an imminent seizure. Sometimes these developed into seizures, some remained simply blank, confused moments leaving Christopher disorientated and unsettled.
"For 16 years epilepsy ruled my life. The anti-epilepsy medication I took seemed to have no effect, and I was constantly on edge wondering when my next seizure would strike. As I got older, the seizures increased in frequency and intensity. I was constantly tired and my long term health began to be of concern."
Fortunately for Christopher, tests in 1992 at the National Hospital for Neurology and Neurosurgery confirmed that brain surgery may be a viable option. In May 1993 he underwent an eight hour operation to remove the damaged part of his brain. (With advances in surgery technique, today this operation would take about two hours.)
The surgery was a resounding success. The seizures recurred initially, but this was due to an over-enthusiastic approach to post-operative life. After much rest and recuperation, Christopher began to do all the things he had only dreamed about.
"My horizons have broadened so much. I've travelled to China and Australia, I've completed an Access course to Professional Social Care and I work in mainstream employment as a Service Assistant caring for people with disabilities.
"From a personal point of view, the surgery has meant that I am vastly more confident and independent now that I am seizure-free. The sad thing is that it wasn't just my condition that limited my prospects and my aspirations before, but the attitudes of other people. Prejudice in the work place was the main reason why I worked in sheltered employment for people with disabilities up until 1995. Attitudes have changed but discrimination still abounds. Even relatives had trouble coping with the idea of my epilepsy sometimes."
The support of close family and friends and college colleagues, as well as a strong faith, have helped Christopher through the difficult times. Now it is his turn to help and support others and he is keen to get across a positive message for other people with active epilepsy.
His motto is that: "Epilepsy is not catching, it is just misunderstood." He reiterates the belief that it is not so much the condition itself that limits people, but the attitudes they face from society as a result of it.
"I'd like to spread the word about what epilepsy is and why one in 200 people in the UK develop the condition. In terms of employment, I would encourage business men to employ people with epilepsy and see how they can work well despite their minor disability. Epilepsy differs from one person to another and it may only be a minor part of that person's life."
In fact, of the one in 200 people who have epilepsy, 80% of them have their seizures fully controlled by medication. Advances in diagnosis and surgery mean that there is hope for a seizure-free life for an increasing proportion of the remaining 20%.
Name: Emily Price
Address: Claygate, Surrey
DOB: 09 / 09 / 63
Occupation: housewife and mum of two
American born Emily married Guy in 1993 and settled in Surrey. Two years later, in January 1995, she was diagnosed with epilepsy, having experienced several tonic-clonic (full, convulsive and with loss of consciousness) seizures. To date, no-one has been able to pinpoint the underlying cause of her epilepsy.
Stress and tiredness are two of the major triggers for her seizures. Initially, different combinations of anti-epilepsy medication brought some seizure types under control, but the side effects of the drugs, such as excess body and facial hair, violent mood swings and double vision, often caused Emily more hardships and heartache than her epilepsy.
"I was a self-sufficient, confident person and then one day - one second - that all changed. I was on medication that was as hard to deal with as the condition itself. I had to turn in my driving licence, I quit my job because I felt stupid and simply couldn't cope. I felt like I had no hobbies. If I wanted just to go swimming I had to have someone with me."
"My self esteem took a plunge into a black hole and it's taken a good three or four years to drag it back into the light again. I seemed to be exhausted all the time and fought depression on a daily basis. I woke up thinking what if I have a tonic-clonic seizure today? Will someone help me? Will people be frightened of me? It's been a horrible thing. My husband has been a saint, supporting me through all that. But he still says today that I'm not the woman he married."
Upon diagnosis and before she met Professor John Duncan, Medical Director at the National Society for Epilepsy, Emily told her husband she would never have children because she couldn't bear to think she might pass on the epilepsy to them. Little is known about epilepsy and heredity; the NSE is currently undertaking research in that area. What is known is that it is possible to inherit a lower seizure threshold and therefore be more susceptible to developing epilepsy than someone else exposed to similar potential triggers. Professor Duncan reassured her and six years on from diagnosis she and Guy have two beautiful, healthy children, Cameron (4) and Amber (2).
Under Professor Duncan's care and guidance, Emily has progressed to a drug regime which controls the tonic-clonic seizures - although she still experiences frequent, but irregular, absences.
The National Society for Epilepsy
The UK's leading provider of epilepsy services in the charitable sector. Its headquarters in Buckinghamshire provides residential care for almost three hundred people with severe epilepsy; is a centre for medical research into the condition and houses the only MRI scanner in the UK dedicated solely to epilepsy. It also operates the largest of three NHS epilepsy assessment facilities in the country.
In addition, the NSE runs a confidential information helpline from Monday to Friday 10am - 4pm.
NSE helpline: 01494 601400
NSE website: www.epilepsynse.org.uk
