PALERMO (ITALPRESS/AZSALUTE) – Cases of beta-thalassemia or Mediterranean anemia are decreasing in Sicily, but the disease continues to be widespread on the island, despite the fact that the Region has invested human and economic resources in the search for healthy carriers, at aimed at identifying couples at risk. The greatest frequency of the disease occurs in Caltanissetta and Syracuse, while the least affected is currently the city of Messina.
“For years the Sicilian Region has paid the utmost attention to this pathology, deploying not only targeted resources, but precisely aligning the care paths with the most up-to-date international scientific evidence. The data from the Epidemiological Observatory, where a specific register is active, speak of over two thousand people taken into care within the different phenotypic levels of the disease”, states Salvatore Requirez, general manager of Dasoe of the Sicilian Region’s Health Department.
“The regional programs – he adds – follow two main directives: strengthening the structural dignity of the dedicated specialist centres, and continuing to combat the natural history of the disease, gaining more and more years and aiming for a life expectancy as close as possible to that of the population free from the disease”.
An investigation by Elma Research on how Sicilians experience the disease was at the center of the meeting “Parallel roads: the meaning of time in beta-thalassemia”, organized in Palermo, as part of the awareness campaign promoted by the Society Italian Thalassemia and Hemoglobinopathies (SITE) and created with the contribution of Vertex.
Research has shown that the impact of the disease on the lives of those affected and on their families is very heavy, starting from the time it absorbs from other activities.
“The removal of time from leisure activities, professional or study commitments, social relationships, which patients and their families experience every day must be the starting point for thinking or rethinking communications, activities and services aimed at improving patients’ quality of life”, states Raffaella Origa, SITE President.
In fact, those affected by beta-thalassemia must resort to blood transfusions and daily medication every 2-3 weeks to survive. Multiple scheduled checks. It is estimated that in a year around 25-30 visits to hospital facilities may be necessary, a sum of hours that takes away from the patient over a month of life per year, time taken away from school, study, professional life, not only of those affected by the pathology, but also of family members.
A significant burden that affects the daily life and psychological well-being of patients and their loved ones.
“The good news is the lengthening of the average life of these patients. About twenty years ago, the average was around 10 years, today we can even talk about exceeding 50 years.
“Beta-thalassemia, a very widespread pathology in Sicily, where 7-8% of the population is a healthy carrier, is a genetic condition with which today we can live, become adults and elderly, thanks to increasingly effective treatments. In an area like Sicily, the need for daily therapies and frequent hospitalizations weigh heavily on the organization of the whole family. Patients, but also those who care for them, have difficulty planning their lives with serenity”, claims Giovan Battista Ruffo, Director of the Hematology and Thalassemia Unit of the ARNAS Civico of Palermo and member of the SITE Board of Directors.
– photo Carmelo Nicolosi –
(ITALPRESS).
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