Epilepsy is such an ancient disorder that there are references to this disease even in texts from the Mesopotamian civilization. However, despite the years that have passed since its first description, knowledge about this neurological pathology -which is caused by electrical alterations in the brain- is quite deficient among society and doctors themselves, as revealed by the First White Paper on Epilepsy, edited by the Spanish Society of Neurology (SEN) and the Health Sciences Foundation.
The document has tried to evaluate what is known about this disease both in people on the street (more than 600) and in health professionals who, in some way, may be involved in the treatment of epileptic patients (pharmacists, company doctors, pediatricians , neurologists, neuropediatricians, psychiatrists and primary care physicians).
According to the coordinator of the book, the neurologist at Hospital Lozano Blesa Jose Angel Mauri, the lack of knowledge in this last group has been very surprising. “Most think, for example, that epilepsy is an incurable disease, when it is not,” he says. And it is that the disease, which is estimated to affect 400,000 Spaniards -although the White Paper does not include prevalence studies and the figures vary according to the different studies- if it can be cured in some cases, both spontaneously and, in some cases, if surgery is used.
But, beyond healing is quality of life. And this is, according to the neurologist, as normal as anyone’s in about 75% of patients. With medication, epileptics can do everything that a healthy person can do, and this includes activities such as driving, precisely one of the deficits located by this book in terms of the knowledge of doctors.
“There are some affected, who do not exceed 30%, who are at risk of suffering an attack at any time and they are not allowed to drive; the rest, yes, and we have seen that the doctors do not know,” says Mauri.
Perhaps the most striking thing about the survey is precisely the knowledge about how to act in the event of an epileptic seizure. The book has shown that, as things stand, it is almost better not to meet a patient in crisis on the street. With current knowledge, you could almost do more harm than good.
Among the beliefs inserted in the population, the most striking, because it is erroneous, is the idea that patients of this type must have something inserted in their mouths. “It is said that it is to prevent them from swallowing their tongue and that is false. By putting something in their mouths, their teeth can be damaged or even contribute to drowning,” emphasizes the doctor from Zaragoza.
It is also mistakenly believed that a person who suffers a crisis must be restrained. However, the correct attitude is to place him on his side and at rest, until the crisis passes there. Once it was revealed that the degree of ignorance is high, Mauri points out that the intention of the SEN is to take action.
“We have to carry out information campaigns with all the groups and we are going to start with the patient associations”, he explains.
The president of the Andalusian Association of Epilepsy (APICE), Rosario Cantera, who has participated in the design of the surveys, was present at the presentation of the White Paper. “The important and widespread errors in relation to the care of a convulsive crisis that the study reveals show the imperative and urgent need to carry out national campaigns in all sectors, with the aim that the care of an epileptic crisis is part of a general culture of first aid”, he stresses.
Mauri, for his part, points out that epilepsy may not be as well known by doctors because it can have different symptoms. “It is believed that generalized crises, which we call great evil, are the only form of manifestation of the disease and it is not true; there is a lot of variability in the symptoms, which can be motor or only sensitive, for example,” he concludes.
