Patients diagnosed with chronic myeloproliferative neoplasms “do not have to give up their dreams. For most of them, in some stages of the disease, the goals will not be 100% achieved but it is up to us and to initiatives such as ‘Honey-Explain’ helping patients and caregivers to pursue dreams and goals. “Thus Francesco Passamonti, Professor of Hematology at the University of Insubria in Varese and Director of Hematology in Varese, speaking at the event” Living, dreaming, climbing: returning to life beyond rare cancers of the blood “, webinar for the presentation of ‘Mielo-Spieghi 2022’, the information campaign on chronic myeloproliferative neoplasms (including polycythemia vera, essential thrombocythemia and myelofibrosis) promoted 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 management of the disease. “Chronic myeloproliferative neoplasms – explains Passamonti – are genetic pathologies, that is, they express genes that are altered in 90% of cases which are JAK2, Calr and Mpl. They present with specific characteristics: platelet disease and excessive production of red blood cells and white blood cells in the blood in the case of polycythemia vera, platelets in essential thrombocythemia, and very heterogeneous manifestations in the case of myelofibrosis. While polycythemia vera and essential thrombocythemia are indolent diseases, myelofibrosis in some forms can be quite aggressive. For this we must be very careful about the thrombotic risk and the evolution of these two diseases. As far as myelofibrosis is concerned, the evolution towards acute forms must be monitored “.” We can improve the quality of life of these patients – continues Passamonti – by ensuring that they adhere to the treatment programs that we doctors offer them. Today we have new drugs, the patient must adhere to what is proposed to him by sharing the possibilities of standard care and clinical trials. One of the objectives of us doctors, and of regulatory agencies, is precisely to improve the patient’s quality of life. diet, which is absolutely important because it reduces the inflammatory state and vascular risk. We advise patients to avoid salt, sugars and fats in general and to adopt a correct lifestyle by practicing sports. To those who use antiplatelet and anticoagulant therapies and who have particularly high platelets we recommend swimming, walking, running and cycling, they must avoid physical activities from contact com and football, basketball and rugby “. The incidence of new cases of MPN – it emerged from the meeting – is between 0.8 and 1.2 per 100 thousand people. “This is why they fall into the categories of rare diseases – underlines the hematologist -. There is a prevalence of the female population in polycythemia vera and essential thrombocythemia unlike myelofibrosis which mainly affects men. These are diseases whose diagnosis is made between the ages of 60 and 70 but we also have cohorts of 20-30% of patients under the age of 40 ”. But what are the real needs of people with a diagnosis of MPN and of those who care for them? “We asked about 550 Italian patients and caregivers – recalls Elisabetta Abruzzese, hematologist at the Sant ‘Eugenio hospital, ASL Roma2, spokesperson for the board of 10 hematologists who supervise the’ Mielo-Expieghi ‘project – through a questionnaire. Most of them are women, between 51 and 71 years old. The survey revealed that 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. And again: 4 out of 10 believe that knowledge of the disease and its treatments can improve the quality of life, so they ask for clear information on the disease and its evolution. A significant awareness also 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 “. Not only that, “40.3% – continues Abruzzese – argues that greater knowledge about the disease and its treatments improves the quality of life; for 24.9% the availability of psychological counseling and other multidisciplinary services is also essential. Another 24% asked for clearer access to rights and exemptions, fortunately patient associations and the Mielo-Expieghi website provide information on this. But there is also 8.1% who ask for greater availability of physical or other support. Knowledge is therefore fundamental to improve the quality of life and controlled communities such as Mielo-Spieghi are used for this “. Faced with a problem “6 out of 10 turn to their referring haematologist doctor (59.7%) – recalls the haematologist – 25.3% try to deal with the problem alone, 10.5% ask for help from family members and / or other patients they know, 2.2% seek help from people outside the family and the sick environment. It is therefore important for the patient to know that there is a reference person such as the hematologist who can accept her words “. To the question “what do you need to manage MPNs?” patients have no doubts: “For 52.4%, the important thing is to be strong and determined, 26.2% argue that it is necessary to change their lifestyle in order to manage symptoms, for 18.4% instead have caregivers at your side ”he concludes.
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