There is important news on the drug front. Professor Iacopo Olivotto takes stock of the situation and illustrates the characteristics and status of the trials on this medicine. As regards the activity of our Association, we must note with satisfaction the strengthening of the volunteer service at the Careggi Unit. One of them, Valerio Pelini, our vice president, talks about it. The next course for expert patients in hereditary myocardial diseases will be held in Milan on Saturday 23 March.
Adapting the amount of water based on individual needs and environmental conditions is an effective way to contribute to overall and heart health. For this reason it is good to know and follow EFSA's recommendations.
Mavacamten and Aficamten are the two new drugs for the treatment of hypertrophic cardiomyopathy. Mavacamten has entered the “compassionate” use phase. This means that the drug is already available and can be supplied by the manufacturer for patients with hypertrophic obstructive cardiomyopathy, upon request by expert cardiologists. Aficamten is a little further behind in the experimentation process.
Aicarm operates in the context of a region that is very rich in terms of volunteering, which is an enormous social capital. At the cardiomyopathy diagnosis and treatment unit in Careggi, the number of volunteers who make themselves available to patients facing their first diagnosis or going there for a check-up is increasing. They inform them and make themselves available to them for every need. It is a service of the same nature as Hearts in Listening, but with direct human contact.
A new information sheet for AICARM members. Emil Tsenov, entrepreneur and author of the novel "The Green Tunnel", which tells the story of a woman suffering from hypertrophic cardiomyopathy, faces one of the most delicate choices patients can face, that of implanting a defibrillator.
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.
The year that has just begun immediately proposed us some fundamental objectives to be at the service of our community of patients and doctors, addressing the most urgent problems on which to bring all the pressure and conviction of the Association to bear. In this newsletter we continue our offer of thematic information sheets by proposing the article by Emil Tsenov, an entrepreneur marketing consultant, who examines all the aspects inherent to the choice to implant a defibrillator. The author is involved in various initiatives in favor of patients.
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.
Success of the Cuori in Ascolto service: the answers to patients that the web and social networks cannot give
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.