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World Day of Chronic Inflammatory Bowel Diseases (MICI): in Italy there are 250,000 people living with these conditions and the event is dedicated to the psychological impact of these pathologies.
AMICI Onlus, the Association that brings together people with these problems, wanted to do a research to understand how much illnesses lead to a sense of isolation and stigma in every area of one’s existence; family, relational, professional. What the patient is experiencing is one feeling of not being understood in his condition of fragility, in his own needs and in the requirements determined by the periods of the active phase of the disease: chronic fatigue, impossibility of planning commitments, poor sociality.
What emerges from the study
The research was conducted in collaboration with EngageMinds HUB – Consumer, Food & Health Engagement Research Center of the Catholic University of the Sacred Heart. The data that emerge are certainly not encouraging and confirm that these pathologies are still little “considered”.
On average, patients have been diagnosed for 15 years (range 0-51). 25% suffer from one or more other diseases. 43% have suffered relapses or aggravations in the last year. Most of the patients interviewed (87%) believe that less than one in three Italians know what IBD is. The results of the survey on citizens, however, show that more than half of the respondents state that they have already heard of IBDs, even if only 15% say they have good knowledge of them.
The results show a relatively poor knowledge of IBD compared to the other chronic diseases examined: almost all of the participants, in fact, know well or have already heard about chronic diseases such as celiac disease, AIDS and diabetes, while less than 70% of them have heard of IBD; of these, only 15% claim to have a good knowledge of it (for other diseases, this percentage is around 50%).
Overall, the large majority (more than 80%) of participants indicate that at least most of their family members and health care providers are aware of their disease. Less well is the area of friendships: only in 58% of cases there is awareness among the friends of the participants. Finally, only in just over 40% of cases, colleagues and superiors are aware of the participant’s health condition.
About one in three patients indicate that they have been bothered by nervous tension over the past month. 29% of the patients reached stated that, in the last month, they often felt physically fatigued by the practical management of the disease (check-ups, etc.).
What are IBDs?
A, ulcerative colitis, concentrates its effects in the last part of the intestine. The other is called Crohn’s disease, it mainly affects women and can affect the entire digestive system, involving the intestine itself in all its components, the stomach and even the esophagus. Together the two diseases are defined with the acronym MICI (in fact chronic inflammatory bowel diseases), which are often referred to as IBD.
Both pathologies tend to start already at a young age, with a peak of incidence between 15 and 35 years, so they have a heavy impact on people at the height of their productive and emotional life. Early recognition of these pathological conditions is essential, but it is not always easy.
For example, the diagnosis of Crohn’s disease is difficult to make, because the symptoms may initially resemble those of irritable bowel (what we call “colitis”) or inflammation of the intestine. Then, thanks to the targeted exams, the situation is defined.
Getting to identify IBD early is important because the two diseases are characterized by symptoms caused by damage to the intestinal mucosa (and in the case of Crohn’s also other tracts of the digestive system) that follows inflammation. If they are not recognized and treated, they lead to progressive intestinal damage, which leads to complications and the need to resort to surgery, which is still necessary in many cases. But even on this front, science continues.
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