00:00We are talking about rare epilepsy and we are talking about people who, in addition to epilepsy, have a series of other disorders, especially of a psychological, cognitive and even physical type in some cases.
00:24Rare and complex epilepsy therefore fall into the field of encephalopathy and epileptic development, which need to be addressed in an integrated way.
00:38Therefore, a precocious diagnosis is necessary, first of all, which is done fundamentally with genetic study, and then to start a path that is not only therapeutic but also assistential in a sensual way.
00:56It is necessary to organize a multidisciplinary team in which, in addition to the pediatrician, the epileptologist also works, in addition to the psychologist-psychiatrist, the rehabilitation therapist, both the physiotherapist-kinesiotherapist, the logopedist, the psychomotorist, the occupational therapist
01:21and any other type of specialist who addresses the issues of that single case.
01:29Therefore, the challenge is a precocious diagnosis and the implementation of a multidisciplinary team that works in excellence centers.
01:43The problem is that excellence centers are not evenly distributed throughout the national territory, but they are found only, above all, in the north center of our country.
01:57Therefore, it is necessary to organize and implement PDTAs that provide this type of integrated assistance.
02:07Clearly, the period of transition from the pediatric age to the adult age is the crucial moment, the most critical moment.
02:15In general, in the infantile age, the teams that work in the centers of the pediatrician-psychiatrist face the problems of that single subject in an integrated way, in the best of ways.
02:31With the adult age, unfortunately, this no longer happens, in the sense that there is no discussion between the team of the pediatrician-psychiatrist and the adult neurologist.
02:45There is no possibility to relate, at least in Italy.
02:50But I would say that the problem of the transition is a worldwide problem.
02:56Therefore, it is necessary that in the specific PDTAs for the assistance to people with rare epidemics, a team that deals with the transition is organized.
03:11There is a need for investments in structures and in personnel, above all specialized.
03:19And many of the problems, even economic ones, to solve this problem today could be solved by exploiting modern technology, for example telemedicine.
03:32With telemedicine it is possible to organize teleconsultations, tele-rehabilitation, tele-psychology.
03:41And above all, it can be achieved in all territories, thus avoiding what is called sanitary migration, which is the real problem of our country.
03:52Because in the southern regions there are very few centers of excellence that can also deal with the problem of the transition.
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