For a patient suffering from a genetic heart disease, the decision to implant a defibrillator is not an easy one. There are many pros and cons, a lot of information to take into consideration and, although the advice of your doctor is fundamental, the final choice can only be up to the patient.
Reflections on a study appearing in the Journal of the American College of Cardiology which reports the evolution of the incidence, management and prognosis of AC in athletes in France. The complication-free survival rate tripled. In Italy it is necessary to extend CPR training programs and increase the installation of AEDs, also involving middle and high school students and installing AEDs in all workplaces as well as in sports.
To help people diagnosed with cardiomyopathy, AICARM has activated a listening desk managed by volunteers and experts: Cuori in Ascolto. AICARM has trained a group of volunteers who, in addition to being carriers of a cardiomyopathy themselves, have acquired basic knowledge on the diagnosis, the different therapies and the pathogenesis of cardiomyopathies. I am able to actively listen to the patient or a family member and establish an empathetic relationship, creating contact between two people who share similar problems.
Mavacamten is the first approved drug of a new class of drugs, which reduce the activity of "cardiac myosin", a protein fundamental for the contraction of heart cells, which plays a decisive role in creating obstruction to the outflow of blood left ventricle in most patients with hypertrophic obstructive cardiomyopathy. A few weeks ago, the activation of the Compassionate Use Program was officially published on the AIFA website.
2024 will see AICARM still committed to disseminating knowledge on cardiomyopathies, we will organize other courses for expert patients during the year. However, we have seen that there is a growing demand for knowledge about cardiomyopathies. And providing answers with in-person courses is not enough to cover patients' requests and, for this reason, next year AICARM will combine the in-person courses with other training activities carried out online.
The shortage of Nadolol in pharmacies is increasingly worrying doctors and patients and for this reason AICARM APS has decided to contact the director of the Italian Medicines Agency Domenico Di Giorgio to request urgent intervention. In a letter sent on 4 December 2023, President Franco Cecchi, together with the pharmacologist Alessandro Mugelli, asked AIFA to take action to ensure the availability of Nadolol in pharmacies (including by importing it from abroad) and to request its production from the Institute Military Pharmaceutical of Florence.
The objective was the presentation of the volume Il Cuore Grande to the representatives of the institutions, sponsors and supporters of Aicarm. But the event was transformed into a great celebration for the four years of life and activity of the Association in the setting of Villa Bardini, the exceptional terrace on the hill recovered for the use of Florentines and visitors and restored thanks to the CR Firenze Foundation which manages the spaces through the Bardini and Peyron Monumental Parks Foundation.
Why cardiac MRI is prescribed, how it is carried out and what it is used for: these are just some of the questions answered by Dr. Chiara Zocchi, who works with Dr. Maurizio Pieroni, head of the cardiomyopathies and rare heart diseases clinic of the San Donato hospital. It is a very useful decalogue for the patient who is asked to undergo this test, because it clarifies the meaning and its dynamics point by point.
Guidelines on the different forms of Cardiomyopathy presented at the Congress of the European Society of Cardiology in Amsterdam. There is much new knowledge and consequently opportunities for doctors and patients in terms of diagnosis and treatment options for patients suffering from cardiomyopathy.
After the summer break, the courses for expert patients of AICARM will resume in September 2023. The next course to be held on September 9, 2023 at the Arezzo hospital where I work. The Arezzo site was chosen above all to provide the opportunity for patients from South-East Tuscany and Umbria who have not participated in previous editions to participate.