Come back to life, keep an active role and keep giving yourself small and big goals. This is the heart of the 2022 edition of Mielo-Spieghi, the information and awareness campaign on chronic myeloproliferative neoplasms (polycythemia vera, essential thrombocythemia, myelofibrosis) promoted by Novartis in collaboration with Aipamm and with the patronage of Ail and Mpn Advocates Network. Objectives of the initiative: to convey clear and correct information, promote greater awareness and offer opportunities for discussion and sharing on the daily management of these rare blood cancers, as well as supporting patients and their families. The initiative has a Fb page (Facebook: @MieloSpieghi – Website: www.alleatiperlasalute.it/mielo-spieghi/) which has consolidated over time as a reference point for those living with a rare blood cancer and today has a community of over 31 thousand people. Mielo-Spieghi talks about MPNs with emotional and scientific contents that are always up-to-date thanks to the advice of a board of expert hematologists. For 2022, the campaign wants to take a step forward, providing the patient with all the tools necessary to make him active, to help him set new goals and thus return to life. These are rare chronic onco-haematological diseases with a progressive and generally slow course, but with important symptoms and complications, such as thrombosis; in some patients they may develop into other blood disorders, such as acute leukemia. For this reason, knowledge of the treatment path, changes in habits and adherence to therapies, when necessary, can make a difference on prognosis and quality of life. ‘Mielo-Expieghi’ for patients is a tool of great value and potential. Climbing Mont Blanc after a diagnosis of myelofibrosis and two years after the transplant may seem unthinkable, but not for Francesca Masi, a Tuscan psychologist and trekking enthusiast who will try to climb over 4,000 meters in July. The diagnosis of myelofibrosis, the most aggressive and rarest of the three myeloproliferative neoplasms (about 350 new cases a year in Italy, average age of diagnosis 67 years) did not stop the patient. On the contrary. This is how the Facebook page of Mielo-Spieghi will tell about his adventure step by step in the “Fino in top” section. In this way Francesca’s challenge will become the challenge of the whole community. The campaign provides for a calendar of live meetings throughout 2022 on the Fb Mielo-Spieghi page involving hematologists from centers of excellence and patients to talk about the many aspects that affect the life of those affected by these rare blood cancers, such as for example intimate relationships, pregnancy, lifestyle. The community is invited to participate live with questions and comments, thus creating a highly informative and emotional dialogue. In order to better manage chronic myeloproliferative neoplasms, a multidisciplinary approach is required which involves the involvement of various specialists. Precisely with a view to multidisciplinarity, the Facebook column “Honey-Explains the expert” kicks off: a psychologist, a nutritionist and a patient rights expert will address – each from their own point of view – various issues of interest to patients for help them actively manage their condition and return to life. It’s not all. In September, on the occasion of the blood cancer awareness month, a special animated strip will come to life inspired by the true story of a patient to tell the daily experience with a chronic myeloproliferative neoplasm: the challenges, the small and big goals, the support of close people. The Mielo-Explain website collects all the campaign tools. Among these stands out the MPN Tracker (https://www.mpntracker.com/it-IT/), an intuitive online tool to help the patient to regularly monitor their symptoms and to have a clear general picture of the disease to share with your reference hematologist.
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