Interview with Prof. Augusto Marinelli, scientist, founding member of AICARM Onlus

 

Augusto Marinelli, you were rector of the Florentine university from 2000 to 2009, you are not a doctor, yet your name is one of the founding members of Aicarm, why?

I am suffering from non-obstructive hypertrophic cardiomyopathy (CMI) of genetic origin and as a carrier of this pathology I have decided to contribute, with other patients and cardiologists, to create the Aicarm in support of the numerous heart patients in terms of scientific knowledge, training , orientation, promotion of research and sometimes in economic terms and representation.

CMI is a pathology identified in the second half of the last century and has not received particular attention from the institutions in charge in terms of scientific research and assistance.
In Florence, Prof. Franco Cecchi with a small group of collaborators has deepened his knowledge with original research, done together with the most important national and international centers. Today Florence is one of the main points of reference for many patients and for some years the Cardiomyopathies Unit, directed by Prof. Iacopo Olivotto, has been established at the Careggi University Hospital.

Some concrete examples of things to do

The important thing is to implement the things I described above and they can be achieved with the commitment of all of us volunteers as soon as the fine-tuning of the "machine" and its operational tools is finished, also with the prospect of avoiding unfortunate situations of the past.

For example?

I remember one for all: the serious dysfunction that recently occurred in the case of genetic testing. As is well known, the results of the tests are essential to clarify the type of cardiomyopathy and investigate the condition of family members. Well, I happened to have a reply about three years after the withdrawal, despite the repeated requests made to the institutional bodies, the statements to the press and a complaint presented to the judiciary. During this long waiting period I learned that hundreds of Italian patients in therapy in Florence were in the same condition as me. The Aicarm will also have to serve to avoid disservices such as the one described by exercising its institutional role as patient representative.

You discovered your illness by accident in '79

For an abnormal electrocardiographic trace (it was my first electrocardiogram) I was hospitalized, without symptoms, in the hospital for "suspected heart attack!" and after a week of observation, with the advice of the then young Dr. Cecchi, I was discharged with the diagnosis of hypertrophic cardiomyopathy. I did not know the disease but the diagnosis had a destabilizing impact on me. With anguish I thought that I would have a very different life from the one I was living and for which I had built important prospects.

Hers was a world of international relations, renowned scholars, what did they tell you?

Relatives, friends and colleagues expressed solidarity with me and gave me advice even though they knew less about the disease than I did. With the support of my family, I chose to rely on the care of those who had made the diagnosis and who still follow me. With him I learned to live with the disease, to know its evolution and to do periodic checks. Knowledge and awareness have led me to lead a normal life and to realize my aspirations despite having had to face, with serenity, the various stages of the disease in correspondence with which I took the most suitable drugs and underwent the most appropriate procedures.

You have been, in many ways, an observer of the progress of research in this field

In recent years, scientific progress has led to unthinkable advances in the medical, technological, surgical and pharmaceutical fields. I am convinced that scientific research will continue to develop new knowledge that will lead to easier diagnosis and treatment of pathologies, even rare ones.
Finally, I think I am one of the first in Italy among those who have had the diagnosis of CMI and as a "veteran" I take the liberty of giving some advice to all concerned: know the disease and learn to live with it; choose a cardiologist or a center specialized in CMI and let yourself be guided with confidence; firmly believe in scientific research, the only source capable of improving current knowledge.