Neurofibromatosis type 1, the ‘We are infinite shades’ campaign begins
Rare genetic disease affects one in 3 thousand people in the world, in Italy it involves 20 thousand patients
ROME – We are all different but, sometimes, diversity distances and excludes. There are children who feel uncomfortable, different, and therefore tend to isolate themselves for fear of being excluded from others. These are the children affected by neurofibromatosis type 1 (NF1), a rare genetic disease which presents with a great variability of signs that impact on the physical appearance and can significantly affect the emotional and social sphere in a very delicate phase of the growth path.
The challenge of comparing with others and ‘feeling different’ becomes one of the first obstacles that children with NF1 are often called upon to face, starting from scholastic context. ‘We are infinite nuances’ was created 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. Beyond the signs of neurofibromatosis, the campaign promoted by the Ananas Associations – National Association for Help for Neurofibromatosis, friendship and solidarity, Anf – Neuro Fibromatosis Association, and Linfa Association – Let’s fight together against neurofibromatosis, in collaboration with Alexion, AstraZeneca Rare Disease.
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NEUROFIBROMATOSIS TYPE 1
NF1 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 can include the appearance of café-au-lait spots, freckles of the folds such as the neck and armpits, multiple skin and subcutaneous neurofibromas , ocular, neurological and oncological complications.
In 30-50% of cases the disease can manifest itself with very visible signs, plexiform neurofibromas: tumors which grow on the nerve sheaths and can cause deformations, cause pain, make movements difficult.
“NF1 is a complex pathology – explains Maria Cristina Diana, Uoc Pediatric Neurology and Muscular Diseases Irccs Istituto Gaslini of Genoa – 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 and is therefore It is essential to be able to count on multi-specialist teams that include, for example, oncologists, geneticists, neurologists and hospital paediatricians“.
“However – he continues – this is not always possible since there is no diagnostic path yet. – standardized and uniform therapeutic approach that guarantees homogeneous care of the child throughout the national territory, and a consolidated network that helps families to be correctly directed to the high-expertise reference centers of our country”.
The disease also influences all areas of life, especially that of social relationships: its signs have a significant impact on a physical and aesthetic level, and children often find themselves in situations of marginalization and stigma.
“NF1 poses numerous challenges for children and their families – comment the Ananas, Anf and Linfa Associations – 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 about the disease is the first step to help break down these obstacles, starting from school as the key place to teach everyone the value of inclusiveness. 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 a educational project, ‘Special like us. More stronger friends’, a path to raise awareness of NF1, and rare diseases in general, within schools, particularly in classes IV and V of primary school. and in lower secondary schools, promoting inclusion and diversity among young students.
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The first stage of the educational project was a workshop in which children with and without NF1 played together and, thanks to words and drawings, expressed desires, concerns, fears. An activity that allowed us to collect the experiences of these little patients and their friends. From here, thanks to the ideas collected and the commitment of everyone, patient associations and clinicians, in collaboration with the publishing house Librì projects education, the project continued with the creation of a kit educational program that will be distributed in schools next September.
“Children with NF1 – underlines Claudia Santoro, University of Campania ‘Luigi Vanvitelli’ of Naples– often have to endure the growth, even sudden, of plexiform neurofibromas. Formations that can cause pain, or can deform the features, impacting motor skills, preventing them from playing and moving as they would like. This can certainly have a negative impact on their quality of life /strong> also fueling anxiety and worries. We can certainly act with the therapeutic options available, but this is not enough”.
“Treating patients and improving their quality of life – he continues – also means promoting and support valuable projects which, like the ‘We are infinite nuances’ campaign, consider patients’ needs and requirements beyond their illness, and look at their growth and their future”.
THE EDUCATIONAL KIT
The educational kit consists of a narrative book, a guide for teachers and an information booklet for parents. The book tells the adventures of Giò, a boy with NF1 who attends the first year of secondary school. By using shortstories, the reader will get to know the protagonist chapter by chapter, coming into contact with his daily life (what are his passions, his friends, how he spends his days, what are his fears) and will gradually get to know more and more the NF1 pathology is profound (how it manifests itself and what impact it has on one’s life).
The book has a dual objective: to explain and talk about a complex disease like NF1 andto raise awareness among boys and girls on the topic of inclusion and on the strength of friends.
The guide for teachers represents the operational tool that will allow you to plan and implement reflections, activities and workshops in the classroom on the topics of emotions, identity, relationships and empathy.
Together with the scientific consultants of the project 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 informative 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 Like Alexion, it is ambitious, because it wants to make a difference for people who have a rare disease and for their families – concludesAnna Chiara Rossi, VP & General Manager Italy, Alexion, AstraZeneca Rare Disease – 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, within our company outside, with an attentive eye on patients and caregivers“.