It is not easy to deal with a chronic myeloproliferative neoplasm, a rare tumor that affects the bone marrow: 1 in 2 people have difficulty accepting the disease, 1 in 3 confesses that they do not understand the causes and 1 in 4 does not understand its possible evolution. This is what emerges from a survey of over 500 Italian patients and caregivers, involved through the online channels of ‘Mielo-Spieghi’, the information campaign on chronic myeloproliferative neoplasms (which include polycythemia vera, essential thrombocythemia and myelofibrosis). by Novartis in collaboration with Aipamm and with the patronage of Ail and the MPN Advocates Network. An activity program that focuses on the active role of patients, to draw attention to symptoms and improve disease management. The data of the survey, conducted with a scientific board of 10 hematologists, also underline a significant thirst for information: 4 out of 10 believe that knowledge of the disease and treatments can improve the quality of life, so they ask for clear information on the pathology and on the its evolutions. Finally, a significant awareness emerges: 1 patient out of 2 knows that there are no secrets to manage the difficulties of MPNs, it is necessary to be strong and determined. On the one hand, the difficulty of accepting a chronic myeloproliferative neoplasm (50% of the interviewees) and the fear of possible developments (28%). On the other hand, the thirst for knowledge (43%) and the awareness of having to be strong and determined every day to take back one’s life (52%). For these patients, the imperative is to return to life. Precisely to respond to the needs that emerged from the survey, the 2022 edition of Mielo-Spieghi kicks off, an initiative dedicated to the return to life: new social columns, special projects and MPN Tracker, a tool dedicated to patients to help them learn about and manage your illness and stay active. “Myeloproliferative neoplasms are rare tumors that affect the bone marrow – explains Francesco Passamonti, professor of hematology at the University of Insubria in Varese and director of hematology in Varese -. They can have a slow but progressive course. Symptoms can also be important, but some therapeutic innovations, such as JAK2 inhibitor drugs, have improved the course of these diseases: now patients can build a new daily life and set themselves small, big life goals “. Coming back to life is possible as the story of Francesca Masi, patient with myelofibrosis, Tuscan psychologist and trekking enthusiast who in July, 2 years after the transplant, will try to climb over 4 thousand meters of Mont Blanc demonstrates. Her enterprise will be told in the Facebook column “Up to the top” and her challenge will become that of the whole Mielo-Spieghi community. “I am a mountain lover – says Francesca Masi – since I was 25 I have been spending my holidays trekking. One of my biggest wishes was to be able to climb Mont Blanc. At 40, I discovered I had myelofibrosis and dealing with it was not easy. Many sick people – like me – climb mountains of difficulty to overcome illnesses. Now I’m fine and in July I’ll try to climb a real one, to seal this moment and celebrate the desire to live life “. A correct therapeutic approach and the doctor-patient alliance play a fundamental role in activating the patient: only in this way can people feel involved in their own treatment path and remain active in the management of their disease. In order to help patients understand their level of activation towards the disease, Mpn Tracker is available, a new and intuitive online tool that allows the monitoring of symptoms so as to have a clear general picture of the disease to share with your reference hematologist. . “Today, therapeutic innovations have changed the history of chronic myeloproliferative diseases and it is now possible to live with them actively, as the challenge of Francesca Masi testifies. These are little known diseases. In this sense – says Alessandro Maria Vannucchi, full professor of Hematology at the University of Florence and director of Sod Hematology Aou Careggi – the doctor-patient dialogue becomes central in the treatment process: it is essential to address issues related to everyday life with our patients. , because today coexistence with the MPs is possible “. “We are happy to see how much the community of patients and caregivers has grown around ‘Mielo-Spieghi’ – says Luigi Boano, General Manager of Novartis Oncology Italy – the comparison with those living with chronic myeloproliferative neoplasms is for us a constant incentive to do always better. Novartis strives every day to improve the lives of patients by developing innovative therapies and awareness projects. Thus, together, we can re-imagine medicine and the future of people with these pathologies ”. The appointment therefore, from today and throughout 2022, on the Facebook page @MieloSpieghi and on https://www.alleatiperlasalute.it/mielo-spieghi, for a calendar full of initiatives.
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