“From the moment of diagnosis and then at every stage of the disease, neurofibromatosis has a very important psychological impact on children. We are talking about a pathology with a thousand different facets and manifestations, consequently with an unpredictable evolution. A very important problem for parents who will have to make their children understand how to live with the disease, but above all for children since their social life will inevitably be affected. So imagine how important and difficult it is for a child to have to face the world of school, sport or social life in general, perhaps finding himself with very important complications due to the disease, not only on an aesthetic level but also on a physical level”. Thus at Adnkronos Salute Maria Malatesta, president of the National Association for Help for Neurofibromatosis, Friendship and Solidarity (Ananas Aps) on the occasion of the presentation – today in Rome – of “We are infinite nuances. Beyond the signs of neurofibromatosis”, a project promoted by the Ananas Associations (National Association for Help for Neurofibromatosis, Friendship and Solidarity), Anf (Neuro Fibromatosis Association), and the Linfa Association (Let’s fight against neurofibromatosis together), in collaboration with Alexion, AstraZeneca Rare Disease .
“Think for example of plexiform neurofibromas which, in addition to being aesthetically evident, can lead to limitations on a physical level because they are very painful or disabling – explains Malatesta – All this leads to a series of problems for which psychological support from an early age is very important” . It becomes very important “to carry out campaigns of this type precisely to encourage the inclusion of children within the social fabric: it is essential to start from the world of school by educating all school workers and families so that they are informed on every aspect of the disease – underlines Malatesta – And launching this project just a few days after International Neurofibromatosis Day (17 May) is very significant. The day was in fact established precisely to raise awareness among institutions and public opinion about the disease and therefore the campaign is an important starting point to safeguard our children”.
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