“Cardiac amyloidosis manifests with the first symptoms early, then explodes in its most severe form around 40-50 years of age, or when this silent killer has already operated with its dangerous effects. For this reason, we must guarantee these patients a timely diagnosis ”. This was stated by Paola Binetti, UDC Senator and President of the Parliamentary Intergroup for Rare Diseases, speaking, through a video message, at the online presentation of the social campaign “Raccontamy – Those who experience cardiac amyloidosis have something to tell you”, an initiative promoted from Rare Diseases Observatory in collaboration with Famy – Italian Association of Family Amyloidosis Onlus, Italian Foundation for the Heart and Conacuore – National Coordination of Heart Associations – Odv.
The objective of the campaign, which will take place on Omar’s Facebook and Twitter pages and on the Youtube channel from 23 June to September 29 (close to World Heart Day): to inform and raise awareness of doctors, institutions and public opinion on a disease that manifests itself with a picture of heart failure and that is often confused with other pathologies and, therefore, underestimated.
“If, as in all respects, the vaccination campaign against Covid-19 is bearing fruit, even the National Health Service – underlined Binetti – in the perspective of what the PNRR should open to us as horizons in a few days, could return to dealing with more than all patients, not only Covid patients, giving back to each of them the possibility of an early diagnosis and a clinical intervention that allows adequate monitoring to control the progress of therapies but also to intervene with the change factors necessary to improve their quality of life “. “We – concluded the president of the parliamentary intergroup for rare diseases – are fighting with great intensity in the Health Commission of the Senate so that all patients are taken into consideration without any discrimination”.