di Francesca Conti
Last March 23, at the San Luca Hospital of the Italian Auxological Institute in Milan, Aicarm organized the course 'Patients Experts in Hereditary Myocardial Diseases'.
The meeting addressed crucial issues regarding hereditary heart muscle diseases, offering insights into the importance of genetic counseling, the psychological implications of diagnoses and therapies, recommendations for physical activity and sports fitness, as well as vital information on arrhythmias in cardiomyopathies. Pharmacological therapy of cardiomyopathies and specific surgical procedures such as myectomy and mitral plastic surgery were also covered.
A particularly well-attended course, both by people who came from all over Lombardy but also from the rest of Italy, but also thanks to the presence of prominent speakers, in particular the cardiac surgeon Paolo Ferrazzi, well known within the community of patients, for his experience, competence and great humanity. The involvement of those present was evident, with numerous interventions and questions from those in attendance. The participants' interventions created an interactive and collaborative environment, encouraging the exchange of knowledge and experiences between patients, families and healthcare professionals present.
Among the topics addressed are also issues related to contraception and procreation, aspects of vital importance that are often overlooked but which directly involve women, families and couples. Another topic of great interest was that of sport and physical activity, addressed in a scientific way with reference to parameters and clinical tests useful for understanding the limits and recommended activities. This discussion is of particular relevance for young people and adolescents affected by these pathologies, who often find themselves limited not only in sports practice but, often also in recreational-motor activities. The problem of the "discomfort" experienced especially by young people who have a form of Cardiomyopathy was also discussed, and for this reason the project of an intervention supported by AICARM for patients belonging to the Auxological Institute was also presented.
Finally, some patients and members reported their experience and presented the book "The Big Heart" as an example of how to live with a Cardiomyopathy.
The event was a further step in forming a community of patients and families interested in hereditary myocardial diseases, and offered a further valuable opportunity to share crucial information and to promote greater awareness and understanding of the challenges related to these pathologies.