“Compared to a previous snapshot, there was an improvement in both care and quality of life for people with Crohn's disease and ulcerative colitis. The recent Acquire-Ibd survey aimed to take a snapshot of the situation and the unexpressed needs of patients , from his point of view.” This was stated by Salvo Leone, general director of Amici Ets – Association for chronic inflammatory bowel diseases (MICI), commenting on the data of the survey which involved a sample of 1,300 people, conducted with the technical and scientific support of the Catholic University of the Sacred Heart, specifically of Engagement Hub, presented in Milan during the press meeting 'Crohn's disease and ulcerative colitis: let's give light to the invisible', promoted by Abbvie.
The general picture emerging from the survey is encouraging, but there is no shortage of challenges. “Only 10% of patients with ulcerative colitis are significantly informed about the disease – underlines Leone – a percentage that rises to 18% in the case of patients suffering from Crohn's disease. One in 3 patients experiences the disease in a state of alert constant, a condition that can affect the quality of life and also the quality of care. Over the years the scientific community has become better at supporting and treating patients with these pathologies, but there is still a lot to do – reflects the general director by Amici – For example, we are very focused on the patient when he arrives at the hospital, but we probably need to do something more to support him, follow him and support him between one visit and another”.
The stigma surrounding the chronic disease state also greatly affects the patient. “We are talking about pathologies characterized by a non-visible disability, with symptoms that are difficult to describe – remarks Leone – If there is no knowledge, the people who live around the patient, who are not those closest to whom the patient has told his story real condition, they may not understand. Stigma is often the result of ignorance: not ignorance linked to lack of understanding, but precisely to the fact of not knowing.”
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