(by Nicola Simonetti) Epilepsy, "sacred evil", which generates easy shame, creates stigma, induces inequalities of assistance and treatment.
The word epilepsy derives from the Greek verb epilambano, which means “to take by surprise”, which, in fact, causes crises.
Sudden loss of consciousness with falling to the ground, stiffening of the whole body, arrest of breathing, cyanosis, drooling in the mouth, rhythmic jolts of the whole body have made the disease considered as a "Sacred Illness" or as 'demonic possession' (Hippocrates he entitled his XNUMXth century BC treatise on Epilepsy “The Sacred Disease”).
On the occasion of the International Epilepsy Day which is celebrated on 10 February, the Italian Society of Neurology (SIN) takes stock of this neurological pathology which appears to be among the most widespread, so much so that it is counted by the World Health Organization (WHO) among social diseases.
Epilepsy, in fact, affects about 50 million people worldwide and, in industrialized countries, it affects 1 person in 100: it is therefore estimated that there are 6 million people affected in Europe and about 500.000 in Italy.
This pathology can occur in all ages, but in particular, it records two peaks of incidence: one in the first years of life, linked to a greater extent to genetic-metabolic causes, but also to risks related to possible perinatal suffering, and the other at an older age, by virtue of the higher incidence, in the elderly, of vascular and neurodegenerative diseases and also due to the increase in life expectancy.
The most negative aspect of the disease concerns the fact that crises can occur suddenly, at any time and in any context, and can cause loss of consciousness with consequent traumatic falls and even serious injuries; moreover, if the crises are not well controlled, they cause severe limitations in the daily life of patients, from work activities to affective and social life, and an enormous psychological burden to bear.
"The scientific progress of recent years - said Prof. Giancarlo Di Gennaro, Director of the UO Center for Epilepsy Surgery IRCCS NEUROMED, Pozzilli (IS) and Coordinator of the SIN Epilepsy Study Group - have resulted in numerous discoveries in the field of genetics and of basic sciences, with significant advances in understanding the molecular mechanisms that generate epileptic seizures, as well as leading to a rich armamentarium of effective antiepileptic drugs, with increasingly innovative mechanisms of action and generally with better tolerability ".
Furthermore, in that third of patients who are drug-resistant, it is possible to evaluate, after an accurate multidisciplinary pre-surgical study, the possibility of a surgical treatment aimed at removing the region of the cerebral cortex responsible for the crises, often with excellent chances of recovery. Finally, in drug resistant cases, which cannot be operated on, there is the possibility of the so-called "neuromodulation", ie a palliative treatment through the surgical implantation of devices (vagal stimulation or deep brain stimulation) that deliver electrical stimuli directed to the brain, capable of reducing the number and severity of crises.
The disease affects the male gender slightly more than the female, a gender difference that could be due to the genotype, to a different prevalence of risk factors in the two sexes or to the concealment of the pathology in women for socio-cultural reasons.
The appearance in the first year of life is, in part, explained by the causal role of genetic factors and by risks associated with various causes of perinatal suffering. The increase in incidence in the older population is due to an increase in life expectancy and the concomitant increase in age-related pathologies of epilepsy: brain stroke, neurodegenerative diseases, tumors and head injuries.
Help to the sick comes from dogs trained to recognize the imminent arrival of a crisis, thus warning the owner and all those close to him, so that they can intervene promptly.
In Italy, the NHS expenditure for epilepsy is estimated at over 880 million Euros and an impact on pharmaceutical expenditure of more than 300 million Euros per year, equal to an average cost per patient of over € 600 ( individual variations according to the shape of epilepsy and any other pathologies present in the same subject).
“The disease can occur even at an early age and especially children and young people - reports the Italian Society of Pediatricians - are penalized by prejudices, still too heavy, according to 57% of mothers and fathers. Only 12% of children are well integrated and not discriminated against, one in three has no friends, 53% only a small circle with which they have managed to integrate. The family pediatrician remains an irreplaceable point of reference for 1 in 2 parents, even if 1 in 5 relies on the internet for information on their child's disease ".
There is still a lot to do for people with epilepsy: it is necessary to increase scientific research more and more and strengthen socio-health policies in favor of patients in order to improve access to care and raise diagnostic-therapeutic standards more and more . Above all, however, it is necessary to educate and inform people about epilepsy, by supporting information / educational actions on a large scale, in particular in primary and secondary schools, in order to reduce the prejudices and social discrimination that unfortunately still characterize this pathology.
The use of qualified centers is important. The recognition of an "advanced set-up" center, corresponding to the maximum operating level, is awarded to specialized centers for epilepsy equipped with a multidisciplinary team, full scientific and diagnostic / therapeutic activity and high-tech instruments capable of to carry out prolonged video-EEG monitoring, including pre-surgical selection of patients with drug-resistant epilepsy.
Among others, the “Center for the Study and Treatment of Epilepsy” of the Complex Structure of University Neurology of the “Ospedali Riuniti” of Foggia stands out. It is one of the few recognized "advanced centers" in Italy and is the only one in Puglia. Inserted in the Complex Structure of University Neurology, director Prof. Carlo Avolio, of the Department of Neuroscience, Director Dr. Ciro Mundi, the Center for the Study and Treatment of Epilepsy has in its team neurologists, neurologists in training, technicians of neuro pathophysiology, nurses and psychologist.
"The recognition of an advanced organization center makes us proud and rewards the assistance and organizational efforts carried out in these years" - declared the center manager Dr. Giuseppe d'Orsi.
"The important recognition does not represent a point of arrival, but a further push to strengthen the center for the study and treatment of epilepsy to offer maximum support with humanity and professionalism to patients and their families" - concludes the General Manager of the Polyclinic of Foggia, Dr. Vitangelo Dattoli.