Rome, 22 March (beraking latest news Salute) – In Italy there are 150,000 people living with Crohn’s disease, with an important incidence in children under 19. It is a still little known chronic inflammatory bowel disease that, in 95% of cases, to avoid the acute phases, requires considerable food sacrifices – abolition of foods such as chocolate, dairy products and sugary drinks – thus generating frustration, isolation and difficulties. socio-relational for young patients and their families. In light of these issues – emerged from an analysis by EngageMinds Hub – Consumer, Food & Health Engagement Research Center of the Catholic University – the social campaign “Crohnviviamo – Stories of young people that Crohn’s disease cannot stop” promoted by Nestlé Health is born Science, with the support of Modulen, food for special medical purposes for Crohn’s patients, in collaboration with the Amici Onlus association.
The analysis also shows a difficulty for patients in finding reliable nutritional advice in 40% of cases, which often leads to information on the internet, forums and social media groups. The social campaign was therefore born with the aim of increasing knowledge of the pathology and giving voice to the socio-relational problems related to nutrition, which children with Crohns find themselves experiencing every day. The name “Crohnviviamo”, in fact, is a hymn to the desire to do things and to the joy of living, despite the disease. In fact, young people want to reconcile the search for a normality made up of alternatives to the most common choices of taste and pleasure in eating with living fully the opportunities for socializing.
“The analysis of the literature – explains Guendalina Graffigna, scientific director of the study – has highlighted a growing scientific interest in the relationship between diet, chronic inflammatory bowel diseases (Mici) and psychology, even if an international consensus does not yet exist. For patients, nutrition is an area of daily life heavily invested on an emotional level. However – underlines the expert – there is a lack of scientific studies relating to the impact of food foregoing on the psychological well-being of patients and on the social stigma towards this disease. Our research, which now includes three empirical phases of data collection focused on young patients, their caregivers and their gastroenterologists, aims to make a contribution in this sense “.
Started last December, the research conducted by EngageMinds Hub is the first initiative that is part of the “Crohnviviamo” campaign. For the first part of the analysis, international scientific articles on the diet of those with the disease and on factors that threaten psychosocial well-being. From the mapping of 2,782 studies it emerged that the issue of dietary renunciation and the exclusion of certain foods from one’s diet is the most present problem in the articles. Despite this, the debate is still immature especially in Italy – where nutrition and meal times play a socio-cultural role of aggregation and sharing – and for the pediatric age.
And again: it was found that patients recognize a close correlation between nutrition and the symptoms of the disease. However, foods that are not allowed in the diet are experienced as an imposition and cause temptation and frustration. This leads to a frequent refusal of the recommended diet, the renunciation of meals outside the home and the participation in parties or other convivial moments. Furthermore, the disease not only has a negative social impact on the lives of patients, but also on caregivers, who, by adapting – in some cases – their eating habits, find themselves involved in the same dynamics of ‘collective’ renunciation. In other cases, however, it is the family members themselves who further contribute to the feeling of loneliness, as 1/4 of people living in the family said they do not share meals with loved ones.
“Crohn’s disease, in addition to having an impact on the psycho-social well-being of young patients, also affects the emotional sphere of both the sick and their families, wrapped in a general sense of regret and pity, which often lead people to lose appetite but also to give up parties, lunches outside the home, thus depriving oneself of the social and relational aspects of life, important in the adolescent and pre-adult phase “, declared Enrica Previtali, president of the Amici Onlus Association. “Especially today, where we all find ourselves experiencing a condition of social isolation, we can better identify with and understand the difficulties and feelings that these young people carry inside every day”.
The “Crohnviviamo” campaign will try to respond in a concrete way to the needs and problems of people with Crohn’s disease and their families, also through the involvement of the patient association, experts and institutions on various issues, such as inclusive cuisine. Through a series of initiatives that will be developed in the coming months, the main aim will be to rediscover the taste and pleasure of socializing, essential elements to better live with this chronic disease and to counteract the feeling of shame and embarrassment that young people bring with them. .
“The mapping data confirms a strong need on the part of patients to receive clear information regarding diet and correct eating habits, in order not to run into fake news, and testify to the emotional distress of people with Crohn’s disease”, underlines Marco Alghisi, Business Executive Officer Nestlé Health Science Italy. “As a leading company in proposing high-profile nutritional solutions, we are committed with this campaign to research and develop projects to establish a virtuous circle available to the patient, involving gastroenterologists, pediatricians, caregivers and the association of patients ”, he concludes.