“It is absolutely necessary to increase the level of knowledge of cardiac amyloidosis in order to receive a timely diagnosis, just as it is necessary to carefully consider a patient’s family history and not to underestimate the symptoms, even if modest. For a correct management, the presence of an experienced multidisciplinary team is an essential element, while new therapies must be promptly available. Finally, we believe that there are three tools to be adopted: the diagnostic-therapeutic guidelines, the Pdta and the patient register ”. Thus the representatives of Famy – Italian Association of Family Amyloidosis Onlus, Italian Foundation for the Heart and Conacuore – National Coordination of Heart Associations – Odv during the online presentation of the social campaign “Raccontamy – Those who experience heart amyloidosis have something to tell you” promoted by the Observatory for rare diseases and to which the same associations have collaborated.
“Fortunately – says Giuseppe Ciancamerla, president of Conacuore – there are more and more centers of reference for patients with cardiac amyloidosis. Structures that, however, cannot do without a multidisciplinary team that includes general practitioner, cardiologist, orthopedist, hematologist and physiologist. This is the good news. The bad news, however, is that patients report difficulties in accessing the same centers, as well as complaining about a long process even years before reaching a certain diagnosis. Only by increasing the level of knowledge and information can we help these patients to recognize the symptoms and refer them to specialists ”.
The social campaign that will take place on the Facebook and Twitter pages and on Omar’s Youtube channel from 23 June to 29 September (near World Heart Day) will be structured in 5 videos in which patients will tell their stories, but will also highlight the unmet medical needs. Among the messages of those living with the disease: “The problem was getting to a diagnosis”, “Many could have amyloidosis without knowing it”, “I am relatively well, I take my walks but I will no longer run the New York marathon ”,“ The role of associations is fundamental ”, just to name a few.
“Fortunately today there is much more attention for this devastating and fatal pathology which can have tragic consequences within 2-4 years – underlines Andrea Vaccari, president of Famy -. The diagnosis is often late, it is made when precious time has been lost. There is a lot of attention for this rare disease even by pharmaceutical companies, but the approval of drugs still takes too long, even 18-24 months, that the patient cannot afford. We are talking about drugs that by law should be approved in 100 days. Therapies approved by the US FDA, by the EMA but which, on the other hand, are not yet available in Italy ”.
In Italy there are 18 specialized centers for patients with cardiac amyloidosis, “however – again Vaccari – the problem remains the accessibility to these structures for people who have various problems, including motor and gastrointestinal problems. We have one of our associates who is forced to hitchhike to go to the hospital with a walker. Here, situations like this are not a civilized country. Not only that, but the management of access to the centers cannot change from region to region, otherwise everything becomes more complicated ”.
For Paolo Magni, president of the Scientific Committee of the Italian Heart Foundation, “citizens must know that there are pathologies such as cardiac amyloidosis. Rare diseases – he explains – are not common, but they exist. We must help citizens understand through webinars. , online dating and the digital campaign “Raccontamy”, that amyloidosis affects various organs, mainly the heart, and is a progressive disease: at first it manifests itself in a mild or asymptomatic form but then progresses. For this reason it is important to support these patients, so that they recognize signs and symptoms. Even climbing stairs at some point becomes more tiring. Often we blame advancing age but it is not. We must not blame aging for so many symptoms. if anything, knowing the patient’s family history, the more we know, the more we are able to better manage rare diseases which today, it must be said, are less scary ”.