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Myeloproliferative neoplasms, returning to life is easier with patient associations

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Chronic myeloproliferative neoplasms are diseases that affect blood-forming cells and have a major impact on quality of life. The symptoms with which they occur are often difficult to associate with a specific pathology and their trend is fluctuating. The result is a sense of uncertainty and helplessness which can lead to depression. Instead, it is essential to break this vicious circle: if it is true that myeloproliferative neoplasms are diseases that must be dealt with forever, it is equally true that the symptoms can be kept under control and it is possible to learn tricks and habits that improve the quality of life. The first source of useful information to understand how to best manage myelofibrosis, polycythemia vera or essential thrombocythemia are the patient associations, in particular Aipamm and Ail. These associations are an important point of reference for many people suffering from myeloproliferative neoplasms, which are also able to help and give psychological support. And they are even more fundamental when it comes to this type of disease. This is what is reported in an article published in ‘Allies for Health’, a portal dedicated to medical-scientific information created by Novartis. Faced with a diagnosis of a myeloproliferative neoplasm – the article reads – it is normal to feel disoriented, fearful and helpless. Thanks to the associations, to be found among those closest to home or present in their own treatment center, patients can receive scientifically correct information on the disease, symptoms and therapies, share their experiences with other patients and ask for advice, find practical indications on their rights. Patients who participate in associative life also find more incentives to actively deal with their disease, a determining factor in those who have to live with a chronic condition. The active patient is able to keep his situation under control, is aware of the habits that improve symptoms, is informed about the therapies and follows them according to the doctor’s instructions. These patients feel that they are actively involved in what is happening to them and have a better quality of life. Having an active and informed attitude towards your pathology allows you to return to life. Often, in fact – we still read – for patients with myeloproliferative diseases the diagnosis and the treatment path represent a turning point, the awareness of having the tools to be able to deal with that series of disorders that afflicted them but that did not have a precise definition. In this process, the support given by other patients is fundamental, by those who experience the same disease on their skin and can give concrete help to the reconstruction of a new daily life. The complete article is available at: https://www.alleatiperlasalute.it/la-voce-del-paziente/insieme-si-reagisce-meglio-le-associssioni-pazienti-aiutano-rimanere-attivi.

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