Most common brain disorder in the world is the most misunderstood and neglected
Epilepsy is far more widespread than is generally realized, affecting 40 to 50 million people worldwide – around 1 in 200 of us. We probably all know someone with epilepsy, even though we may not be aware that they have the condition. Yet, myth and misunderstanding abound, sometimes even among the medical profession – even the best neurologists do not always understand epilepsy! Epilepsy can strike anyone at any time, but it is not an illness. It affects the brain, but it is not a mental or psychiatric disorder. It may sometimes be passed on from generation to generation, but it is not contagious. It is not usually curable, but in up to 80 per cent of cases it can be controlled effectively by drugs.
So what is epilepsy? Broadly, epilepsy means no more than a tendency to have seizures; This liability to seizures may be caused by many underlying brain dysfunctions. Epilepsy is a group of disorders, not a single condition. It covers a multitude of conditions to do with brain malfunction – in fact, asking what is epilepsy is rather like asking what is weather, when every day is different. It affects each person differently, with a wide range of symptoms and very varying degrees of severity. Epilepsy is best understood on an individual basis.
This is all the more so as epilepsy is a condition which affects not just many aspects of health, but also lifestyle issues such as relationships, education, careers and hobbies. In children and teenagers, for example, proper treatment of epilepsy is essential to allow them to fulfill their educational potential, learn how to form relationships, create confidence, and generally live life to the full.
For women, epilepsy has very particular implications in terms of sexual development, the menstrual cycle, contraception, fertility, pregnancy and the menopause. Until recently, the treatment of women with epilepsy tended to be the same as the treatment of men with epilepsy, despite the fact that 50 per cent of people with epilepsy are female. In practice, this meant that women were treated as if they were men, and their specific medical needs tended to be ignored or overlooked. However, there is now increasing recognition of the fact that having epilepsy is not the same for a woman as for a man, and treatment reflects this more, one of the most important areas being pre-conception counselling.
In older people, epilepsy has added relevance in that it may be a symptom of an underlying condition such as stroke. Early treatment may also help prevent physical damage from seizures, which may pose an additional danger to older people whose bones tend to be more brittle. Seizure control is also vital in terms of giving confidence to older people, who may risk isolation through fear of having a seizure or not being able to drive. This applies potentially to all with epilepsy but may have special relevance for older people.
Understanding epilepsy means different things to the affected person, and to the doctor. As with all medical conditions, the person affected views it from the inside, the doctor from the outside, although epilepsy may be singular in that the affected person often has no direct experience of what a seizure is like. If you lose consciousness during a seizure, you miss the essential symptom of your condition. This limited perception is often further clouded by lack of information about the condition, which can be surprisingly common even among people affected by it.
For people with epilepsy, epilepsy tends to be understood best in terms of its immediate impact. This may vary but potentially includes poor health, vulnerability, the constant dread of seizures, having to take daily medication, perhaps not being able to drive, being uncertain about a career, lacking confidence in relationships. This sounds a daunting list. But, it must be emphasized that it by no means applies to everyone with epilepsy. Self-imposed limitations (along with over-protection from others) may do more to affect a person’s experience of epilepsy than almost any other factor.