For the health and dignity of people with epilepsy

For the health and dignity of people with epilepsy

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patient associations

FEDE Epilepsy

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It is rare that a middle-aged Spaniard has not witnessed an epileptic episode in a family member, neighbor or passer-by. There are millions of people and society tends to corner them.

TUNATURE

Epilepsy. The meaning of this word, derived from classical Greek (in that language, literally, attack), is known to all. The World Health Organization calculated that about 50 million people suffer from it on the planet. The most optimistic calculations indicate, in the absence of official figures, that eight out of every 1,000 Spaniards have experienced it in their flesh. Some 350,000 people, 29,000 of them under 15 years of age.

This chronic disease projects an alarming image during a passing crisis. For this reason, those who suffer from it are cornered in a marginal plane of society, stigmatized. And this is where patient associations and scientists play a polyhedral role: recognition of the disease, social awareness, how to treat it, how to act during an epileptic seizure and where to look for the most appropriate pharmacological or surgical formulas for each type. of epilepsy. It is not a simple task, because more than 130 types of epilepsy are considered rare or infrequent diseasesas explained by Elvira Vacas, president of the Spanish Epilepsy Federation (FEDE), which brings together more than 25 patient associations.

This federation of those affected is currently putting together a mass awareness project, a major epilepsy meeting scheduled for early next year. The largest epilepsy congress, with the collaboration of the Dravet Support organization. We want capture the interest of society and bring together all the reference agents of epilepsy in a meeting place Among all of them (patients, doctors, researchers, patient associations…), the president of FEDE advances.

Towards an Epilepsy Observatory

Another project that the organization is also studying would lead to a global and stable improvement in the lives of those affected by epilepsy. The Epilepsy Observatory, a stable model of scientific and epidemiological research from all aspects that influence the diseasewhich would be made up of qualified specialists from various fields, including patients.

Other projects have already been carried out to raise awareness in society, such as the edition of the documentary film episodes of a lifewhich are previewed within the framework of an event and a round table organized by the Angelini Pharma laboratory. Ah, the real problems (job rejection, couple breakups…) of several affected are told.

More than 30% of epilepsy is refractory, has no treatment. This makes her drug-resistant, so episodes of crisis are reproduced and the consequent social and labor damage to her, even when she receives medication. The documentary explained that death rate of epileptics doubles or triples relative to the population mean.

The stigma that marks these people is one of the reasons why there has been no progress in research as with other diseases. Epilepsy has been like a mixed bag, explains Vacas, who reconciles the management of FEDE with that of the POCS Syndrome Association, a form of epilepsy with incidence in childhood that is included in the list of rare diseases, as is the case with more than 130 other varieties linked to this multifactorial problem.

The FEDE intends to guarantee rights at an institutional level, stimulate research, facilitate access to drugs and find new therapeutic options, for which the relationship with the Ministry of Health is fluid. Another of its objectives is to transfer to the world of training the methods of action in the face of epilepsy, including them in the prevention of occupational risks or in first aid, points out Vacas. Because, he concludes, it is very likely that we will face an epileptic crisis in any sphere of life, considering that one in ten people will experience a crisis at some point her.

Surgical or drug-based solutions

If the origin of epilepsy is known, There are several types of surgical solutionsthrough the application of very diverse techniques, that they can cure her. The problem is that the trigger of the disease is often very difficult to identify. The cause can be genetic, organic, metabolic or congenital, produced by a brain injury in an accident or the result of infections, tumors…

The FEDE works so that the public sector finances newly created drugs that the National Health System does not yet subsidize. “The pathology itself is what influences the economy of medication costs”, explains Elvira Vacas.

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