Epilepsy is a disease caused by excessive electrical discharges in a group of cells in the brain. It is well known primarily due to the visible seizures that are caused as a result of these electrical discharges. Despite being fairly treatable this condition is thought of negatively in society. In fact, up until the 1970's epilepsy sufferers in the US were denied access to public buildings such as restaurants and cinemas. The UK had also enacted legislation preventing people suffering from epilepsy from getting married. Epilepsy accounts for approximately 0.5% of the global burden of disease, an estimated 50 million people suffer from epilepsy worldwide and roughly 80% of epilepsy sufferers live in developing countries that lack adequate medication. It is estimated that three out of four sufferers in developing countries do not receive adequate care, while nine out of ten cases are left untreated.
In Europe six million people suffer from epilepsy. Every year 300,000 new cases are diagnosed. This is the equivalent to 40 to 70 new cases per 100,000 people. In developing countries the number of newly diagnosed cases per year is almost twice this. In Malta approximately 3,000 citizens suffer from epilepsy. Epilepsy sufferers are to two to three times more at risk of premature death.
In 70% of cases epilepsy can be effectively treatable but unfortunately in Europe only 40% of epilepsy sufferers receive adequate treatment. After taking anti-epilepsy drugs (AED) for two to five years many sufferers can stop taking the AED without relapsing. In 70% of cases children who have stopped taking the drugs have not relapsed. The figure for adults is slightly lower at 60%.
In recent years, many campaigns and events have been held to reduce the negative perception associated with epilepsy. On a global scale the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) launched the "Out of the Shadows" campaign. This campaign sought to provide greater information about the disease to the public as well as information related to the experiences of sufferers, their families and carers. The aim of such events is that of raising social awareness and as a result reducing stigma as well as improving the quality of care provided to epilepsy sufferers. The campaign set up projects all over the globe. One project in China saw the quality of care provided improve while at the same time closed the treatment gap by an estimated 13%. China has a population of 1.3 billion; an estimated 9 million people in China suffer from epilepsy. Approximately 65% of cases go untreated.
May 2013 was the European Month of the Brain. From 25th to 27th May the European Forum on Epilepsy Research held a conference in Dublin. A conference was also recently held in St. Petersburg in Russia, which discussed the psychiatric problems experienced by epilepsy sufferers. The 30th International Epilepsy Congress was held at the end of June in Montreal. The Epilepsy and Society European Conference 2013 will be held in Slovenia for two days at the end of August. The conference will include new workshops targeting nurses, psychologists, neuropsychologists and epilepsy cares.
Technological advancements have assisted in treating epilepsy. The Epilepsy Passport launched by the Commission provided sufferers with tips and precautions for travelling. Following its success an electronic Traveller's Handbook was published, which can be downloaded in over 30 languages. Recently, the Dutch Epilepsy Foundation created a smart phone app called "EPPY". This app allows the user to track seizures and record the possible triggers. It reminds users when medication is due and when new prescription should be collected. The information collected by EPPY can be shared with the sufferers' doctor when users allow it. Finally EPPY has an alarm button for when the epilepsy sufferer feels a seizure coming on. Once pushed the app will automatically contact emergency assistance and provide bystanders with information on what steps to take.
Epilepsy does not only impact the health of sufferers but also has economic and social consequences. Economically, epilepsy results in diminished productivity and which negatively affects sufferer’s financial situation. There have also been significant reports of discrimination and social stigma resulting from the disease. In addition one should mention issues such as reduced access to health and life insurance as well difficulties in obtaining a full driving licence. Despite the progress made in recent years more needs to be done to further improve the standard of living of epilepsy sufferers. This can be accomplished in part through raising awareness, as well as allocating more resources to research. This is what the Epilepsy intergroup at the European Parliament, of which I am a member, seeks to accomplish.