Epilepsy is the second most common neurological disease after migraine. It affects around 50 million people worldwide. However, despite these important figures, most people are completely unaware of this disease or have very bad ideas about it. On the occasion of International Epilepsy Day, which takes place this year Monday, February 12, Why Doctor takes stock.
What is epilepsy?
Epilepsy is a neurological disease which manifests itself in unpredictable attacks, of frequent and variable intensity, often short. These are caused by successive electric shocks that can occur in different parts of the brain. Depending on the affected brain areas, it can be characterized by convulsions, involuntary tremors, absences or even muscle stiffness. Overall, there are almost 50 epileptic syndromes. Each may be accompanied by disorders related to the disease and the effects of treatment. Since 10% of the world’s population will have at least one epilepsy attack in their lifetime, a single crisis is not enough to diagnose it. At least two are needed.
Who is affected?
In France, 600,000 people are diagnosed with epilepsy. Among them, 50% are under the age of twenty. In fact, in more than half of the patients, the disease begins during childhood. It is assumed that approximately 10 to 15% of all cases have a hereditary component since epilepsy seems more common in some families.
In children, the disease may also have been caused by brain damage when the child was in the mother’s womb. These can be due to infection of the latter or poor oxygen supply. Epilepsy can also sometimes be associated with developmental disorders, such as autism and neurofibromatosis.
However, sometimes the disease occurs in adults as a result of a brain tumor, stroke (primary cause of epilepsy in adults over 35 years of age) or other trauma to the brain. Indeed, a scar can form in the cerebral cortex and then modify the activity of neurons. Several years may pass between the accident and the onset of the disease. Finally, infectious diseases like meningitis, AIDS and viral encephalitis can cause epilepsy.
What symptoms and repercussions on a daily basis?
Epilepsy causes daily repercussions, disabling manifestations, stigmatizing, and potentially serious consequences. Indeed, if the patient loses control of his movements, a crisis can lead to bodily injury. When an individual falls during an attack, he may injure his head or fracture a bone. Because of the risk of falls, drownings or others, the risk of premature death is higher (almost three times more according to some researchers, almost eleven times more according to others) in people with epilepsy. Some seizures can be fatal in themselves. This extremely rare phenomenon is called “sudden and unexplained sudden death in epilepsy” (MSIE). According to the researchers, an attack could alter the heart rate or stop breathing. A higher risk in poorly followed patients. In addition, during a prolonged crisis, certain areas of the brain lack oxygen, which can cause serious neurological sequelae.
How is it treated?
If epilepsy can last a lifetime, some patients will eventually recover from it. In 60 to 70% of cases, the neuronal hyperexcitability can be reduced thanks to the drugs (today there are about thirty anti-convulsant molecules) and the patient can then lead a normal life. About 60% of untreated people have no more seizures for 24 months after their first attack. In addition, having had your first crises at a very young age seems to favor remission: around 70% of those affected go into remission for 5 years. At the start of treatment, for greater safety, doctors prohibit certain activities for adults. Thus individuals may be prohibited from driving a car or using technical equipment. Then, if several years pass without recurrence, the patient can stop these drugs. In people for whom treatment has failed, there remains the option of surgery to remove the epileptic focus or stimulate the vagus nerve.
What image of the disease?
For centuries, epilepsy has caused fear, misunderstanding, discrimination and social stigma because of its “impressive” manifestation. “This continues today in many countries and can have repercussions on the quality of life of people with Alzheimer’s and their families,” deplores the Epilepsy-France association.
According to a comparative study carried out in 2007, the level of stigma encountered in patients with epilepsy is the same as that reported by people affected by the AIDS virus. This stigma obviously has consequences for the mental health of patients, many of whom find it difficult to cope with their illness. This influences their quality of life and can lead to depression, anxiety disorders and sometimes indirectly a worsening of the disease itself.
Where is the research at?
Scientific research on epilepsy has been developing for two hundred years, which is little when you know that this disease has existed for millennia. This affliction is thus mentioned in written documents dating back 4,000 years with Jesus Christ.
In May 2018, researchers announced that they had removed one-third of the right hemisphere of the brain in a six-year-old boy to overcome his severe epilepsy. Three years after the operation, the child had regained his visual and cerebral plasticity, according to the doctors who had operated on him and followed him during all these years.
Some time ago, in a study published in the journal The Lancet, researchers had also mentioned the therapeutic cannabidiol approach in combination with standard antileptic treatment. According to their 14-week randomized phase 3 clinical trial, seizures and falls in patients treated like this had decreased by 43.9%. Before arriving at a new treatment, it is however a question of studying possible interactions between cannabidiol and clobazam, medicine against epilepsy.
What about the International Day of Epilepsy
At present, epilepsy still suffers fromstereotypes strongly anchored, of diagnostic delays and a generally insufficient care. “The attention paid to the cause of epilepsy is far below needs, which is why the International Epilepsy Day is very useful, allowing a wide communication around this important cause of public health ”, explains the Epilepsy-France association. “It is a privileged moment of exchanges between associations, professionals, patients and their families. International Epilepsy Day is an opportunity to communicate about the disease, the daily lives of people affected by epilepsy and to raise awareness among the general public through the media, ”she continues. Throughout the day, testimonials, debates, conferences, information stands, workshops and events will be organized. For more details on events organized in France, visit the association’s website.
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