“Objective concreteness”. Thus they summarize the spirit that will animate their action. Families and ex-patients united against what has now taken on the contours of a “real national and social emergency”. Anorexia, bulimia, binge eating, vigorexsia, orthorexia: eating disorders – known as DCA or, more recently, DNA (nutrition and eating disorders) – after the pandemic have reached “numbers that can no longer be ignored: an increase which is close to 40%, a growth in hospitalizations that reaches 50%”. A new reality is born in Grosseto from the experiences and commitment of those who have personally fought against these pathologies (former patients, mothers, fathers, brothers, sisters, friends, companions). It’s called the Fiocchetto Lilla Foundation and it will be presented on Wednesday 15 March, in a meeting in Milan at the House of Psychology and simultaneously in other Italian cities.
The victims of these disorders are mainly adolescents, but adults too fall into their network, often forgotten and considered too compromised to receive adequate treatment. It is “a social scourge”, denounce the promoters of the Foundation, which affects across the board regardless of income and cultural level. “They are complex psychiatric diseases involving the mind and the body,” they warn. Dangerous because they are “subtle and deadly”. In adolescents they represent the second cause of death after road accidents, they report. 4 million people suffer from it, more and more children (between 9 and 12 years old), and more and more males. And the whole family gets sick. It’s like an earthquake, a tsunami that overwhelms and destroys everything.
“We live in fear, in the anguish of losing a loved one, of saying and doing the wrong things”, says those who have been through it. “And too often we feel abandoned.” And the stigma that still surrounds these diseases makes seeking help even more complex and difficult. For this reason, the Lilla Fiocchetto Foundation was born. A reality that brings together the good things that have been built with associations such as ‘Così come sei’, founded by Francesca Lazzari, who lost one of her 4 children; ‘I feed on life’, chaired by Stefano Tavilla, who saw her daughter die, Micaela Bozzolasco and Sebastiano Ruzza who experienced the disease firsthand; ‘Perle Onlus’, founded by Mariella Falsini who knows the disease closely, Simona Corridori, creator of the lilac code, and Maria Carla Martinuzzi, pediatrician. These three associations are now creating, as founding members, a new reality “with a national scope”.
The Fiocchetto Lilla Foundation “intends to promote care, research, training, prevention, prompt treatment, listening, credibility, continuity of care and healing paths. In a single word: concreteness”, explain the promoters of the initiative. After years spent “helping people, having a dialogue with local and national institutions, providing prevention and information, raising awareness among citizens, studying more deeply and stimulating professional skills, the time has come for the long and often painful path taken up to now to undertake new roads, with means suitable for the new and growing challenges”.
Among the first missions that the Fiocchetto Lilla Foundation puts on paper is that of “certifying a prevention project for primary schools throughout the country, involving families and teachers, with reproducibility criteria and understandable, measurable, observable objectives (remote follow-up on the boys)”. And again: offering support to families and the sick with listening groups and mutual help; give concrete support and help to those suffering from eating disorders through research, in order to identify the most appropriate and effective treatment paths; cultivate an active dialogue with public institutions and private entities in order to speed up the creation of a network of territorial services throughout the national territory. Thus avoiding painful migrations and unfortunately premature deaths; protect the rights of the patient and of the families with an adequate structure also through legal support.
There will also be attention to communication on these sensitive issues. The idea is to “create a supervisory body which, through the media and social networks, signals who exploits these diseases and who suffers from them for personal or profit purposes”. And then the academic aspect: among the objectives that the new reality sets for itself there is also that of collaborating with universities in order to increase the study of these pathologies. And the list goes on: among the points highlighted there is also the objective of getting in touch with pharmaceutical companies to stimulate the search for ever more suitable and specific drugs.
It will be “a bit like a return to the origins, when people who needed help were at the center”, explain the souls of the Foundation in a video that promise to make their voices heard because “even politics and ministries deal with diseases of eating behavior”. The voices collected in the clip speak of “dignity”, “concreteness”, “support”, of “hope for us too”. The testimonies follow one another in the two-minute video: “More and more often I have had to deal with impotence”. The Foundation, the promoters continue, “is a possibility to create a single choir of voices”. The dream is that “behind every lilac bow there are only stories of victory”.