Table of Contents
Almost 50,000 adolescents in Italy deal with theepilepsy. These are obviously different cases, but united by one reality: the pathology can somehow affect the emotional and social life, modifying the daily reality. To recall these specific problems, which go beyond the control of the disease and its manifestations, are the experts present at the Congress of the Italian League Against Epilepsy (Lice). One figure, in particular, is sobering: almost one in five of children and adolescents suffering from epilepsy presents signs of depression. And it is precisely on the emotional condition that we must act, also on the organizational front.
Choices to be made on a case-by-case basis
Epilepsy is a chronic disease characterized not only by recurrent seizures that can change over time, but also, in the most severe and drug-resistant cases, by behavior alteration, academic and social difficulties. According to the main scientific evidence, in fact, children with epilepsy have mood or behavioral disorders more frequently than the general population. They may have learning disabilities, difficulties in studying and finding work, but also difficulties related to autonomy, body image, peer group, self-esteem and identity.
Imagining to photograph adolescents with epilepsy who are preparing to become adults, it is possible to find epilepsies that, onset in childhood, continue into adulthood, forms that resolve in adolescence, pictures that begin in adolescence and continue into adulthood and epilepsies that they appear and go off during adolescence. For this thepsychological aspect in the management of the treatment it is fundamental and care must be taken to create a “continuous line” that follows these young people.
In fact, many adolescents and young adults with pathologies that limit functional abilities and compromise emotional and social life experience transitional difficulties in the transition from pediatric to adult care. The need for continuity of care during the transition from pediatrics to adult services is particularly important for young people going through the physical and mental transformation from adolescence to adulthood. Good management of this transition period is critical to developing and maintaining the self-esteem and confidence of the adolescent with epilepsy.
“Epilepsies – comments Laura Tassi, president of the Lice – are pathologies that in the majority of cases begin in childhood or adolescence. When it strikes teenagers, it impacts an extremely delicate phase of personal growth, bringing a great change in an age group projected towards a future seen without limits. Having to follow constant drug therapy, respect timetables and not being able to have access to all the activities that peers can refer to, can also have significant consequences. Teenagers struggle to accept that they have a chronic disease ”.
Specific assistance models
The feeling is that we need a model for the transition of care from developmental age to adulthood, a model that takes into account the number and complexity of the problems connected with adolescence. The process, which epileptologists refer to as Transition, is the time when the boy prepares and the family to use the Adult Services appropriately and transmit medical, social, psychological and cognitive information from the child neuropsychiatrist to the adult epilepticologist.
“The first step – explains Tassi – is to identify professionals able to take care of these very special patients. Next we have to get the personal involvement of the kids. Finally, close communication must be created between pediatric and adult specialists. The intervention plan must be an operational, integrated and synergistic tool, conceived in a network logic capable of favoring those who, due to illness, experience particularly complex situations such as loneliness, marginalization, limitations generated by the persistence of crises. A plan aimed at ensuring continuity of response to the needs of those at risk of marginalization in the social, relational and school world. LICE’s commitment is to facilitate the dissemination and synergy of processes “.
Read also
