A social campaign to inform clinicians and, at the same time, to raise awareness in institutions and public opinion on cardiac amyloidosis. With this goal “Raccontamy – Those who experience cardiac amyloidosis have something to tell you” was born, an initiative promoted by the Rare Diseases Observatory in collaboration with Famy – Italian Family Amyloidosis Association Onlus, Italian Foundation for the Heart and Conacuore – National Coordination of Heart Associations – Odv. The campaign, carried out with the non-conditioning contribution of Pfizer, was presented during a press conference which was also attended by patient associations and various institutional representatives.
The social campaign that will take place on Omar’s Facebook and Twitter pages and on the Youtube channel starting from 23 June until September – and will therefore end close to World Heart Day, on 29 September – will be structured in 5 videos in which patients they will tell their stories, but they will also highlight the unmet medical needs. Needs expressed also in a consensus document drawn up by patient associations just a year ago, “Cardiac amyloidosis, know it in order to diagnose it in time and manage it better” and well summarized in an infographic, a real “cardiac amyloidosis manifesto “. These are 5 specific requests that come from the associative world, each one faced by one of the 5 protagonists of the video-testimonials. Among the needs expressed by people with cardiac amyloidosis: the need to increase the level of knowledge of the disease for a timely diagnosis; pay attention to the patient’s family history (the disease is communicable) and do not underestimate even modest symptoms; be taken care of by an experienced multidisciplinary team; timely access to therapies.
“Thanks to the close relationship with the associations, already in 2020 we had identified the 5 key needs of patients, the next step was to ensure that they were listened to and understood by doctors, institutions and all public opinion. At the beginning of 2021 we also identified the suitable model of communication: we were inspired, for ‘Raccontamy’, by the ironic and informal format ‘The Rare Side’, created by Omar to break down the stereotypes of the hero and the victim in rare diseases – Ilaria Ciancaleoni Bartoli, director of the Observatory for rare diseases, told us – We therefore had the content and also the means to convey it: communication, especially through social media, can be truly incisive and allows us to reach a wide and well-selected target. We will tell the disease and involve the public following the heartbeat, the one that gives rhythm to our lives, marks our days: for amyloidosis, the heart is a target and this affects the daily life of patients, their heart rhythm is as irregular as the path that leads them to diagnosis. ‘Raccontamy’ wants to turn a spotlight on these stories and through them bring a rare and little known disease to the center of the scene. Even if a disease unites a group of people, each of them has their own experience that deserves to be told “.
Amyloidosis is a group of rare, disabling and often fatal diseases characterized by the harmful accumulation of amyloid substance within the body. This insoluble material occurs in the form of small fibrils and is composed of proteins which, for various reasons, develop abnormally. There are different types of amyloidosis and these are multisystem diseases that over time compromise the functionality of numerous organs and tissues: heart, kidneys, gastrointestinal system, liver, skin, peripheral nerves and eyes.
The heart, in particular, is the target organ in which amyloid is deposited most frequently, causing a condition called “cardiac amyloidosis”, which manifests itself with a severe picture of heart failure: shortness of breath, asthenia and arrhythmias are the main ones alarm bells. It is an underdiagnosed and rapidly progressive disease: on average, patients live only 2 to 3.5 years after diagnosis.