Inflammatory Bowel Disease: What to Do to Improve Patients' Lives
Three requests to politics and institutions to concretely improve the quality of life of people with chronic inflammatory bowel diseases (IBD), in particular ulcerative colitis and Crohn's disease. Three requests that touch as many spheres of social life: the world of work and education, that of sexuality and parenthood, and that of nutrition, a theme particularly felt by patients.
First: the introduction of tax incentives or contribution relief for companies that offer flexible work options to employees with IBD, the recognition of disability (law 104), and the establishment of specific training courses for teaching staff in schools/universities. Second: the creation of training courses for doctors and healthcare workers to address the issue of sexuality and actively support patients with IBD. Third: the creation of Nutritional Guidelines by the Ministry of Health that help identify ideal foods and food options during the different phases of the disease, thus avoiding do-it-yourself.
The requests are put forward, together, by patients, scientific societies and the pharmaceutical world who, through a co-creation work, have arrived at a shared Manifesto. The document was presented yesterday, July 1, and signed on that occasion also by some representatives of the Institutions who have committed to carrying them forward.
This is the core of the second edition of the campaign “Voci di pancia - dalle emozioni alle azioni”, an awareness campaign promoted by Lilly with the patronage of Amici Italia, Ig-Ibd (Italian Group for the study of Inflammatory Bowel Diseases) and Ifcca (International Federation of Crohn's & Ulcerative Colitis Association).
Three guides and a vodcast seriesBut there's more: three practical guides for people with IBD, each dedicated to an area of identified needs - work and study, sexuality and parenting, nutrition and conviviality - and available on the initiative's website, www.vocidipancia.it , and a three-episode vodcast series with moments of discussion and dialogue between patients, gastroenterologists and experts.
The three thematic areas were identified thanks to the first edition of the “Voci di pancia Campaign”, which brought to light the psychological and social burden of IBD. Many voices (precisely) collected. Like this one: “ I have to go to the bathroom from morning to afternoon. I have reached the maximum number of days of vacation and it seems a bit absurd to me. But work is not the only problem. I go to the bathroom all the time: on vacation, at dinner out, when we are at home cuddling. I can't live anymore ”. Then there is the world of school, where students with IBD can be the object of ridicule by their classmates, but often do not receive any support from teachers either.
“Inflammatory Bowel Diseases are invisible, and precisely because they are invisible, they are often not understood. But behind every patient there is a silent battle, made of pain, urgency, tiredness, loneliness that often affects not only the person but the entire family unit - explains Salvo Leone , general director of Amici Italia and chairman of the Ifcca - Today we want to break this silence. It is not just a medical issue: it is a question of rights, dignity, quality of life”. The Manifesto of Actions also addresses patients, to say: “you are not alone, you should not be ashamed. Your voice counts. Your emotions are the strength from which to build a more just and more humane future. 'Voci di Pancia' is precisely this: an invitation to transform suffering into awareness, and awareness into action”.
What are Mici?IBD is a disease characterized by chronic inflammation of the intestinal wall that causes diarrhea, pain, weakness and weight loss. “These diseases affect over 250,000 people in Italy, with a constantly increasing incidence, and have an onset especially at a young age, between 15 and 40 years old - explains Alessandro Armuzzi , head of the IBD Operating Unit at the Humanitas Clinical Institute in Rozzano (among the Hospitals of excellence for Gastroenterology ) and Professor of Gastroenterology at Humanitas University - Patients with IBD can also suffer from inflammation in other parts of the body such as joints, skin and eyes, and in about half of the cases the disease has a medium-serious progression that strongly affects daily life”.
Ulcerative Colitis and Crohn's Disease are the two most common IBDs. "The first involves the colon and causes the development of ulcers in the mucosa, the most superficial layer of the intestinal wall, causing debilitating symptoms such as abdominal pain, evacuation urgency, rectal bleeding and chronic fatigue; the second, however, involves the entire thickness of the intestinal wall and causes the formation of deep wounds, causing diarrhea and pain more frequently in the lower right part of the abdomen", adds Massimo Claudio Fantini , general secretary of Ig-Ibd, and full professor of Gastroenterology at the University of Cagliari and director of the Complex Structure of Gastroenterology at the Hospital of Cagliari. The psychological and social burden that accompanies these symptoms - he concludes - are too often underestimated".
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