There are an estimated 50 million people with epilepsy in the world. The majority of them (85%) live in the developing world, where there is often considerable discrimination due to ignorance about the condition and many difficulties in getting effective treatment. The Global Campaign against Epilepsy aims to overcome the medical and social barriers that affect the quality of life of those with epilepsy.
What is epilepsy?
Epilepsy is the name given to an imbalance of the nervous system that causes two or more seizures or fits. Seizures can range from very mild, affecting people’s vision or attention for a few seconds, to major seizures with muscle spasms and lack of consciousness for a time. Epilepsy can start at any age, but usually either during childhood or in old age. There are more people with epilepsy in developing countries because malaria, meningitis, complications during birth and malnutrition lead to a higher risk of brain damage.
Epilepsy is commonly misunderstood, partly because fits can be frightening to watch. It is often associated with the supernatural or demon possession. In countries such as Cameroon, India, Indonesia and Swaziland, people believe those with epilepsy are affected by evil spirits. In Uganda, epilepsy is believed to be contagious.
People with epilepsy are more likely to die young because of the risk of injuring themselves during seizures. They also have a higher suicide rate, due to feeling isolated by their communities.
- Children with epilepsy in developing countries rarely receive an adequate education
- In China and India, people with epilepsy are rarely able to marry
- In the UK and US, laws prevented people with epilepsy from marrying until 20 or 30 years ago
- People with epilepsy find it much harder to find work.
Effective medication can control seizures in most people. Yet despite this, three out of four people with epilepsy do not receive any treatment at all. This is largely due to a lack of finance. In Sub- Saharan Africa, there is only one neurologist for every four million people. Even when epilepsy is diagnosed and drugs are available, they are often expensive and of low quality. The majority of people turn instead to traditional healers. However, the treatment of epilepsy worldwide could be achieved, at a likely cost of $5 per person per year.
The Global Campaign against Epilepsy
In response to these problems, a global campaign against epilepsy called ‘Out of the Shadows’ has been launched. The campaign aims to improve the treatment and prevention of epilepsy. It also aims to tackle the social stigma associated with the disorder in many countries. So far over 50 countries have joined the campaign. This is a vital first step since few countries yet have national policies for epilepsy. Information has been gathered from more than 1,200 representatives in over 100 countries. It is clear that, all over the world, the social consequences of epilepsy are usually more difficult to overcome than the seizures themselves.
Adapted from WHO Fact Sheet No 166.