With the first Facebook live, the MIELO-Spieghi campaign goes live. From the Sant’Eugenio Hospital in Rome, today at 6 pm, the appointment is with the ‘Conversations about life with chronic myeloproliferative neoplasms (MPNs) over a cup of tea‘, live on the Fb page https://www.facebook.com/MieloSpieghi, dedicated to the campaign on chronic myeloproliferative neoplasms promoted by Novartis, in collaboration with Aipamm (Italian association for patients with myeloproliferative diseases) and with the patronage of Ail (Association Italian against leukemia, lymphomas and myeloma) and of the Mpn Advocates Network.
The guests of this first meeting of dialogue between doctors and patients are Elisabetta Abruzzese of Sant’Eugenio in Rome; Antonella Barone, president of Aipamm, and Massimiliano Donato, referent of the Ail Patient Group Mmp. The talk is dedicated to what happens to patients after the diagnosis of MPN (polycythemia vera, essential thrombocythemia and myelofibrosis): from the initial reaction, to how to deal with the symptoms and manage the disease. Connected patients can actively participate in the live broadcast by commenting and interacting with the speakers.
Each campaign event is designed to encourage the exchange and sharing between doctors and patients with Mpn to discuss the experience with these diseases and the many aspects that affect everyday life. Among the topics that will be treated, in addition to the changes imposed by the diagnosis, the importance of the correct lifestyle and the doctor-patient relationship will not be lacking.
Polycythemia vera, myelofibrosis and essential thrombocythemia: Chronic myeloproliferative diseases are rare blood cancers with difficult names that most people have never heard of. To fill this information gap, the MIELO-Spieghi campaign has developed several activities designed with patients for patients, available on the Allies for Health website: a questionnaire that helps patients to be more aware of their needs and to communicate with the reference hematologist; MIELO-Spieghi podcasts, stories of patients living with chronic myeloproliferative neoplasms told from their voice; three informative booklets, one for each pathology (polycythemia vera, myelofibrosis and in arrivothrombocythemia essential) dedicated to patients and their families.
Target: clarify and describe, in a clear way and with popular language, the main characteristics of these rare blood cancers and their management.