Children with neurofibromatosis type 1 (Nf1), a rare genetic disease that presents with a great variability of signs that impact on physical appearance, may feel ‘different’ and be hindered in their relationships with their peers, starting from the school. To raise awareness among children, teachers and adults of the value of inclusiveness and to promote, through knowledge, the breaking down of barriers towards all diversity, the ‘We are infinite nuances’ campaign was born. Beyond the signs of neurofibromatosis, promoted by the Ananas Associations (National Association for Help for Neurofibromatosis, Friendship and Solidarity), Anf (Neuro Fibromatosis Association), and Linfa Association (Let’s fight against neurofibromatosis together), in collaboration with Alexion, AstraZeneca Rare Disease.
NF1 – explains a note – is a disease that affects one in 3,000 people in the world and which in Italy is estimated to involve around 20,000 patients. The clinical signs are extremely variable and may include the appearance of café-au-lait spots, freckles of the neck and armpits, multiple cutaneous and subcutaneous neurofibromas, ocular, neurological and oncological complications. In 30-50% of cases the disease can manifest itself with very visible signs such as plexiform neurofibromas: tumors that grow on the nerve sheaths and can cause deformations, cause pain and make movements difficult. “Nf1 – explains Maria Cristina Diana, Uoc Pediatric Neurology and Muscular Diseases Irccs Istituto Gaslini, Genoa – is a complex pathology which, precisely because of the variety of its signs and symptoms, should be addressed with a multidisciplinary approach, especially in the presence of plexiform neurofibromas . These tumors can involve a whole series of organs and districts. However, this is not always possible since there is still no standardized and uniform diagnostic-therapeutic path”.
The disease also affects all areas of life, especially social relationships, and children often find themselves in situations of marginalization and stigma. As the Ananas, Anf and Linfa Associations illustrate, “Nf1 poses numerous challenges for children and their families and sociality is one of these. For those living with this pathology, the quality of life is often compromised not only due to the impact on health, but also due to the difficulties of social inclusion which often lead children to isolation. Turning on the spotlight and increasing information on the disease is the first step to help break down these obstacles, starting from school as the key place to teach the value of inclusiveness to everyone. However, we must not stop at the school context alone, but go further and build paths that have the overall well-being of these children and young people as a priority, accompanying them on the path of their growth”.
The campaign saw the creation of an educational project, ‘Special like us. More stronger friends’ with a path to raise awareness of Nf1 and, more generally, rare diseases, within schools, in particular in classes IV-V of primary school and in lower secondary school. The first stage was a workshop in which children, with Nf1 and not, played together and, thanks to words and drawings, expressed desires, worries and fears. From here, thanks to the ideas collected and the commitment of everyone – patient associations and clinicians, in collaboration with the publishing house Librì educational projects – an educational kit was created which will be distributed in schools next September. “Children with Nf1 – reiterates Claudia Santoro, University of Campania Luigi Vanvitelli, Naples – often have to endure the growth, even sudden, of plexiform neurofibromas. This can certainly have a negative impact on their quality of life, also fueling anxiety and worries. We can certainly act on these aspects with the therapeutic options available, but this is not enough. Treating patients and improving their quality of life also means promoting and supporting valuable projects that look to their growth and future.”
The educational kit consists of a narrative book, a guide for teachers and an information leaflet for parents. The book tells the adventures of Giò, a boy with Nf1 who attends the first year of secondary school. Using shortstories, the reader will get to know the protagonist, coming into contact with his daily life and pathology. The book has a dual objective: to explain and talk about a complex pathology like NF1 and to raise awareness among boys and girls on the topic of inclusion and the strength of friends. The guide for teachers represents the operational tool that will allow you to plan and implement, in the classroom, reflections, activities and workshops on the topics of emotions, identity, relationships and empathy. Together with the project’s scientific consultants, 8 ‘Q&As’ were created to answer the most common questions on the Nf1 pathology. The campaign will then also reach the family, through an information tool that will allow parents to talk about the pathology and also present the patient associations involved in the project.
“We are infinite nuances is a project that resembles us – concludes Anna Chiara Rossi, VP & General Manager Italy, Alexion, AstraZeneca Rare Disease – Like Alexion it is ambitious, because it wants to make a difference for people who have a rare disease and for their families. Just like we do, committing ourselves every day for 30 years in the search for innovative solutions. And it focuses on inclusion, one of the most important values for us, inside our company and outside, with a careful eye on patients and caregivers”.
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