‘Back to Life’, a video on rare blood cancers

Give a name to the malaise and get out of uncertainty, to return to life. For patients with chronic myeloproliferative diseases, such as polycythemia vera and myelofibrosis, the diagnosis and the treatment path represent a turning point, the awareness of having the tools to be able to deal with the series of disorders that afflicted them but that did not have a precise definition. because they are hardly attributable to a blood disease. This is the message of hope contained in the video ‘Back to Life’, launched on the occasion of the 9th World Awareness Day on myeloproliferative diseases (MPN Awareness Day) which is celebrated today, 9 September, in the month dedicated to blood cancers. In the video, the stories of two patients with true polycythemia and myelofibrosis alternate who clearly highlight the sense of disorientation due to the symptoms – headache, itching, fatigue, weight loss – apparently without cause. The importance of the role of family and friends in these moments of discouragement and the ‘turning point’ represented by the diagnosis and dialogue with the haematologist are also highlighted. A few minutes full of emotions that want to break the silence around chronic myeloproliferative diseases.Return to life was born as part of the Mielo-Spieghi awareness campaign, promoted by Novartis in collaboration with Aipamm (Italian Association of patients with myeloproliferative diseases) and with the patronage of Ail (Italian Association against Leukemia, Lymphomas and Myeloma) and of the Mpn Advocates Network, which wants to provide patients with information and tools through which they can be more aware and protagonists of the management of the disease. In particular, the video is the result of a contest launched last April by the Filmmaster production company whose winning idea was selected by the jury of the Mielo-Spieghi Board, made up of 10 hematologists, and by the Patient Associations that support the campaign. “The participation that we found in the contest with ideas that also came from abroad shows how important it is for patients with MPN to promote correct information on these rare forms of blood cancers and at the same time give concrete hope: the return to life is possible “, comments Antonella Barone, president of Aipamm.” We have chosen the idea that best represents what happens when you receive the diagnosis and you can look confidently at the therapy to be undertaken. “The video will be visible on the Facebook page” Mielo- Expieghi “(https://www.facebook.com/MieloSpieghi) which can count on a community of over 26,000 fans active since 2019. Polycythemia vera, myelofibrosis and essential thrombocythemia: chronic myeloproliferative diseases are rare blood cancers with difficult names and which most people have never heard of. To fill this information gap, the “Mielo-Expieghi” campaign has developed various activities designed with patients for patients available on the ‘Allies for health’ website (www.alleatiperlasalute.it/mielo-spieghi/): 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 by their own voice; three information booklets, one for each pathology (polycythemia vera, myelofibrosis and essential thrombocythemia on the way) dedicated to patients and their families, to clarify and describe, in a clear way and with popular language, the main characteristics of these rare cancers of the blood and their management. “People living with myeloproliferative neoplasm often have experienced uncertainty and a lack of information. These are rare diseases that are rarely talked about. This is why it is essential to create awareness campaigns that focus attention on the symptoms, often common and difficult to associate with a haematological disease, and also on the active role that the patient must have “, says Sergio Amadori, national president of AIL.” Arrive as soon as possible. to a diagnosis and the definition of a cure, always maintaining an open dialogue with your haematologist are basic elements to obtain a better management of the disease and quality of life “, he warns.” Arriving at the diagnosis late exposes patients to important risks, such as those related to thrombotic episodes that are typical of these diseases if not controlled ”, says Elisabetta Abruzzese, Hematology hospital S. Eugenio, AslL Roma2. “To avoid wasting further time, it is advisable to search for the Jak2 gene mutation, which is the most frequent genetic alteration underlying these neoplasms, in addition to the blood count. In this way it would be possible to promptly initiate, when necessary, the most suitable treatment that also involves the use of targeted therapies, now available “. Explaining how to best manage the disease is one of the objectives of the virtual appointments that Mielo-Spieghi will organize on Facebook page starting in October, for patients and their caregivers. Four moments of information and discussion, which will involve four clinical centers on the national territory, hosting the reference experts in an informal context, of open dialogue with patients. The meetings will be an opportunity to address doubts, questions, but also to share experiences and testimonies of life with these rare onco-haematological diseases. Appointment on the Facebook page @MieloSpieghi and on the website www.alleatiperlasalute.it/mielo-spieghi/ for a calendar full of initiatives.