AICARM volunteers
di Francesca Conti
We continue the meetings with our volunteers. Ginevra (fictitious name) tells us about her commitment in the Milan group, where communication and patient support are intertwined with her professional experience.
How did you find out about AICARM and how did you get involved with the association?
I learned about AICARM in 2022, when my husband had to undergo surgery to implant a defibrillator. At that moment, I found myself, as a caregiver, having to understand what a defibrillator meant in everyday life. I knew that the defibrillator would, in part, impact daily life, to give a trivial example, the driver's license.
We can say that it started a bit by chance. I did a search on Google and there I discovered AICARM, I contacted the association and spoke with Marco, from that moment my adventure as a volunteer began. Immediately after meeting some members of the association, I joined as a member. Both Professor Cecchi from Florence and Professor Crotti from Milan explained to me what the role of the association was and its mission and that they were trying to create a nucleus also in Milan after the historic one in Florence. In Milan everything had to be invented, I got in touch with Annalisa and Matteo, two very precious members with whom I immediately started working.
Which of AICARM's activities did you decide to get involved in?
As I was saying, the Milan core is very young and for now there are only a few of us active, for this reason we decided to commit ourselves on two fronts: communication and patient support. Having a background as a biologist, together with Matteo Pinciroli, in 2022 we took care of the campaign to raise awareness of genetics in cardiomyopathies and thanks to the support of two geneticists in Bergamo and Florence, it was possible to develop a Survey to evaluate the availability of the genetic test for patients with Cardiomyopathies. This survey allowed us in 2023 to bring home a picture of the management of the genetic test, on its availability, on how it was proposed and on how the data was presented. Furthermore, together with Professor Crotti we began to work on the topic of psychological support for patients with cardiomyopathies and this allowed us to involve two psychologists within Auxologico to activate paths. Then we also began to make the association known, which for me is a fundamental thing. In this sense, we have also held courses for expert patients in Milan, we did one this year, during which we also had the opportunity, as a patient association, to have a slot to present the association and its activities. Three patients told their experiences, how they felt at the time of diagnosis, how they live today. There were many participants and we also received many questions and raised a lot of interest.
What value does volunteering have for you?
For me, more than a commitment, it is a pleasure, and thanks also to my professional path I feel like saying that in some way I am inclined to this type of volunteering linked to communication. I believe that the patient must be informed and have the support of a network of people in the various phases of the disease: from diagnosis to understanding the impact on daily life. Courses for expert patients are essential to have more knowledge about the pathology, networks between doctors of different specialties are essential: cardiology, psychology, genetics, gynecology, endocrinology. For me, support and communication are the two key points of the volunteer work that we are carrying out.