“This year the many activities of ‘Mielo-Spieghi’ were born on the basis of a ‘listening to needs’ questionnaire in which over 500 Italian patients and caregivers participated. From the questionnaire it emerged that one of these needs was to have authoritative answers on some issues. This is why we thought of a calendar of live meetings on the Mielo-Spieghi Facebook page involving hematologists from centers of excellence and patients with chronic myeloproliferative neoplasms to talk about the many aspects that affect the life of those affected by these rare blood cancers. , such as intimate relationships, planning and dealing with a pregnancy, lifestyle “. Like this Antonella Baronepresident of Aipamm on the occasion of the presentation of ‘Mielo-Spieghi 2022’, an information campaign on chronic myeloproliferative neoplasms promoted by Novartis in collaboration with Aipamm and with the patronage of Ail and the MPN Advocates Network.
“To better manage chronic myeloproliferative neoplasms, a multidisciplinary approach is required which involves the involvement of various specialists – adds Barone -. 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 – different issues of interest to patients for help them actively manage their condition and return to life. The column deals with issues that do not only concern haematological disease but other issues that weigh on daily life: from the effectiveness of the anti-inflammatory diet to a healthy and correct lifestyle, passing through the rights of the patient with MPN “.
In September, on the occasion of the month to raise awareness on blood cancers, it will come to life “Call her by her name”, A special animated strip 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. “It’s about a column with animated illustrations, inspired by real stories, to shed light on MPNs – Barone is keen to specify – These illustrations will represent cases of the patient’s ordinary or extraordinary daily life ”.
Among the campaign tools, on the Mielo-Spieghi website stands out the MPN Tracker (https://www.mpntracker.com/it-IT/), “an intuitive online tool – adds Barone – to help the patient to monitor regularly their symptoms and to have a clear general picture of the disease to share with their reference haematologist. L’MPN Tracker allows you to monitor your symptoms and then share them with the haematologist during the visitin this way you can optimize the time of checking with your specialist “.
On the key role of patient associations in the day-to-day management of people with MP, Marco Vignetti, vice president Ail has no doubts: “Like Ail – he explains – we support hematology centers, also from an economic point of view, to allow these structures to work at their best. But we are also very close to patients and caregivers, again through Ail volunteers, providing facilities to host a patient who lives far from the treatment center free of charge. But patient associations such as Ail must above all promote blood donation because treating and saving the life of a patient with a rare blood cancer can mean consuming blood, red blood cells, platelets from hundreds to hundreds of donors “.