Home » Tumors: Aipamm, ‘for us onco-haematological patients, information is life’

Tumors: Aipamm, ‘for us onco-haematological patients, information is life’

by admin

Rome, April 15 (beraking latest news Salute) – “As president of an association that works every day alongside those living with myeloproliferative neoplasia, I experience the importance of involving the patient as an active and aware protagonist of their own path. An active role that must starting right from the attention to the symptoms, often common and difficult to associate with a haematological disease. Do not underestimate your discomfort, do not wait to contact the doctor and ask for further information are the first steps towards the diagnosis which, for those living with a proliferative disease, it can mean recovering a quality of life that seemed to be lost “. Thus Antonella Barone, president of Aipamm (Italian association of patients with myeloproliferative diseases), speaking today at the presentation of the information campaign ‘Mielo-Spieghi’, promoted by Novartis with the collaboration of Aipamm and the patronage of the 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.

Aipamm has 600 registered patients, “but we are in contact with about 5 thousand of the 18 thousand Italians suffering from myeloproliferative neoplasms that affect one person for every 100 thousand inhabitants – explains Barone – so we are talking about rare but not very rare diseases”. For these patients, “in the last year, the general uncertainty linked to the evolution of the disease and a constant need for information – he adds – was superimposed on all the insecurity, but also a sense of fear triggered by Covid, because there were fewer opportunities to meet with your haematologist. The face-to-face visit, in fact, was replaced with the sending of the blood count. And then there was the whole vaccination issue that triggered further problems, problems that overshadowed all other aspects of the disease “.

See also  Lightweight and small size, without sacrificing graphics

Despite the pandemic, Aipamm’s activity has not stopped. Indeed, in full health emergency in Sicily we have opened a psychological support desk and with other associations present throughout Italy, launched a project to be more present and give patients a tool to better deal with this situation, obviously remotely via streaming “.

In addition to the Facebook page @MieloSpieghi on the website www.alleatiperlasalute.it/mielo-spieghi/it, the campaign provides patients and family members with information materials, virtual meetings with experts, a series of podcasts available for free on the main platforms and calls to creative collection and videomakers in a video contest, a challenge of ideas that in the coming months will lead to the creation of a video, to tell with a new look myeloproliferative neoplasms, a group of rare blood cancers characterized by bone marrow alterations and symptoms non-specific.

“This campaign will shed light on myeloproliferative neoplasms and on those who suffer from them – says Barone – I know the patients’ requests well, I am too. In general they ask questions about new drugs, they ask if there are new perspectives and new therapeutic approaches, obviously yes inform about the side effects of drugs. With the outbreak of the pandemic, the Association also received requests for assistance, Law 104, and our commitment to countering fake news. They ask for certified information from authoritative sources , also and above all in the field of vaccines. And the Mielo-Spieghi campaign fully meets their needs “.

“An informed and better informed patient knows what to ask, knows how to optimize the time of the visit and relates better to doctors and caregivers. An informed patient does not delegate to others – he concludes – but is more responsible in managing the disease”.

See also  Scotland, the former premier Nicola Sturgeon arrested for the investigation into the funds to the independence party - breaking latest news

You may also like

Leave a Comment

This site uses Akismet to reduce spam. Learn how your comment data is processed.

This website uses cookies to improve your experience. We'll assume you're ok with this, but you can opt-out if you wish. Accept Read More

Privacy & Cookies Policy