People suffering from a chronic disease, such as cardiomyopathy, need to accept their disease and learn to live with it, to improve their condition over time and adopt a lifestyle compatible with medical advice and their own expectations. These people also need to make informed choices in a shared decision-making process with their doctors, i.e. possess at least a basic knowledge of the diagnosis received and the treatment options proposed. But they also need to know where they can turn with confidence, which reference centers to go to in order to obtain a precise diagnosis and receive the most appropriate therapy for their case.
Cardiomyopathies are diseases considered rare, and some forms are. But in total, the estimate in Italy is at least 180.000 affected people, mostly still undiagnosed. One of the purposes for which Aicarm Onlus organizes courses for expert patients is to help these people in their path of living with cardiomyopathy and to offer them the opportunity to learn more about every aspect of the disease.
During the course, the training course starts from the basic knowledge on the functioning of the heart and the various forms of cardiomyopathy, and develops in the presentation of diagnostic and even genetic investigations, in therapy with drugs used for some time and new drugs not yet approved. Subsequently, the more invasive medical interventions in the treatment of obstructive hypertrophic cardiomyopathy, arrhythmias and finally the psychological approach and lifestyle with issues relating to nutrition and physical activity. Correctly prescribed and practiced physical activity is aimed at improving vital parameters, mood and rebalancing the psychophysical state.
For each topic dealt with, ample space was given to discussion between the speakers and the participants, who intervened with many questions and raised topics of particular interest. Interventions on the difficulty of identifying the reference centers for the diagnosis and treatment of cardiomyopathy in Italy could not be missing, a particularly sensitive issue for our association which also has the mapping project of the Italian reference centres. Difficulties in obtaining a driving license or renewing it, the absence of a disability and assistance policy, and the need for a law for genetic testing of young people who died from sudden death were also discussed. . Fixing these issues is part of the 2023 AICARM program.
The course gave the opportunity to publicly present one of our important projects, which intends to help patients with cardiomyopathy and their families: Hearts in Listening. Hearts in Listening is a free service that can be accessed by telephone by calling 055 0620178 or by making a written request on our website at the page: The service volunteers will offer their time and experience to start a dialogue that comforts and brings hope and trust, and will help users, with the help of volunteer specialists, to better understand the diagnoses and therapies proposed by the doctor as well as giving a help to navigate the labyrinth of our bureaucracy. Two volunteers of the service recounted their experience with cardiomyopathy testifying that, despite the pathology and the difficulties encountered in their diagnosis and therapy, it is possible to live a peaceful life full of satisfaction.
Aicarm Onlus is a young association, with many ambitious goals that needs all your support and help to complete them. Continue to follow and support us, let us feel your warmth and closeness because together we can make a difference for those affected by this pathology. Thank you so much!