AICARM volunteers
di First Botti
“My son was a promising athlete. He left us suddenly, in our sleep, one Saturday night"
says D. the father. “Only later did we learn that he had cardiomyopathy
unknown and potentially lethal. The mother and brother are also carriers of the same
illness and under treatment at this Center. We can say that his death saved their lives ”.
For a few months now, I have been giving some of my time as an AICARM volunteer to the Unit Cardiomyopathies of the AOU Careggi of Florence, currently directed by Prof. Iacopo Olivotto, whose activity began in the early 90s with Prof. Franco Cecchi, when these pathologies were practically unknown. Still only a few doctors, even cardiologists, have full knowledge of it and very few have clinical experience. I introduce myself to patients as a doctor who has practiced other disciplines, to be precise "toxicology", in almost fifty years of hospital activity in Careggi, but I immediately declare that I am there as the bearer of a cardiomyopathy, diagnosed by chance because it is asymptomatic, but currently treated by a group specialist, to whom many have relied.
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I would therefore be an "expert patient" associated with AICARM. The patients seen in two clinics every day are numerous, about 20, but I can't always meet them all, before or after the visit. I dedicate myself to welcoming follow-up patients (there are more than 4.000) from all over Italy, often after a long journey. What I have told is one of many similar cases. I calm down their anxieties, which are rarely present because they know they are followed by an excellent team, which every time performs the complete medical examination and the necessary instrumental tests, schedules those for subsequent check-ups and prescribes the best therapies currently available. Scientific research is in progress.
The role of cardiogenetics, performed by Dr. Francesca Girolami of the homonymous clinic, born within the Pediatric Cardiology of AOU Meyer, is now fundamental. Ever new drugs, for each of the varieties of cardiomyopathy currently known, obtain the AIC (Marketing Authorization) from the drug agencies (European EMA, Italian AIFA). Others are in the experimental stage.
I never go into the merits of the diagnosis and therapy prepared by colleagues, but I clarify some doubts if requested and it is within my reach, I illustrate the mission of AICARM, I provide information material on our Association and some indications on the bureaucratic implications relating to our disease: exemption ticket on medicines and diagnostic services, recognition of disability if necessary, renewal of the driving licence, visit to the provincial medical commission when necessary. With regard to the latter, I report that AICARM is trying, at the government level, to simplify and standardize the access procedures, which also constitute a not negligible annual cost.
I would be a sort of atom of Hearts Listening in the presence, in short. Sharing the various problems related to our illness makes us share in the same difficulties, makes us feel united and supportive. This empathy is the essence of my volunteering. I hope it is useful and rewarding for patients.
It certainly is for me!