“Neurofibromatosis type 1 has various manifestations in pediatric age, approximately 50% of children experience a neurodevelopmental problem which can range from language disorders to learning disorders, to attention deficit, to motor disorders, a picture therefore very variable with different degrees of severity”. Claudia Santoro, pediatrician at the Luigi Vanvitelli University of Campania neurofibromatosis reference center in Naples, told Adnkronos Health on the occasion of the presentation – today in Rome – of the awareness campaign ” We are infinite nuances. Beyond the signs of neurofibromatosis”. According to the expert “it is necessary to provide more information and raise awareness of a complex disease” like Nf1.
“The disease presents complications and orthopedic manifestations, from the mildest to the most severe – adds Santoro – with the need for corsets and surgical interventions and it is certainly ‘visible’ because all our children have the café-au-lait colored spots and freckles. There are also tumor complications that can further impact the quality of life of our children and adolescents, in particular plexiform neurofibromas, formations that can cause pain or deform the features, impact on motor skills, preventing them from playing and moving freely.” Acting with the “therapeutic options available is not enough – underlines Santoro – Treating patients and improving their quality of life also means promoting and supporting valuable projects that look at their growth and their future. It is therefore necessary to focus on greater information” .
Nf1 is a rare pathology, “with an oncological predisposition and with an important neuropsychiatric implication – concludes the expert – from which we understand the high need to educate and inform the general population and the community, not only scientific, about the pathology and its manifestations, and not to make children feel ‘different’. Improving the quality of life of our children and their families means raising adults who will be healthier, regardless of their state of illness.”
#Pediatrician #Santoro #information #neurofibromatosis
