Beta-thalassemia has a strong impact not only psychologically, but also practically on the daily life of patients who often have to reduce their lives and that of their caregivers, losing on average a month a year between therapies and visits.
This is what emerges from a survey conducted by Elma Research and presented today at the meeting "Parallel roads: the meaning of time in beta-thalassemia", at the Center for American Studies in Rome.
The study "measured" how significant the management of care and checks is: transfusions and visits on average occupy 3 days a month, 36 in a year.
Those living with beta-thalassemia dedicate an average of 4 hours each week to specialist tests and 19 days each year to transfusions.
"The presence of beta-thalassemia means for many patients having to often ask for help (68%) for managing their children, taking care of the house or being accompanied to visits; it also means having to make sacrifices.
For 30% it corresponds to a reset of their life in terms of work and family projects", explains Patrizia Amantini, Director of Elma Research. If we consider patients between 21 and 40 years old, 46% say that the disease changes habits, 54% the possibility of travelling, 38% of having a stable relationship or getting married, 42% of having children. "Today in Italy there are at least 7 thousand people who have the disease, of which 73% needs transfusions", underlines Raffaella Origa, President of the Italian Society of Thalassemia and Hemoglobinopathies (SITE). "Just think that 1 in 4 patients needs, every time they go for a transfusion or a visit, to be accompanied by a caregiver .
Those who accompany patients in their treatment journey are very often a parent, even over 18 years of age". To shine a spotlight on this condition, SITE promotes the "Parallel Roads.
Beta-thalassemia: voices, images, needs", created with the unconditional contribution of Vertex Pharmaceuticals: a project which, through stories, testimonies and scientific insights, aims to make people reflect on how time is a fundamental element in the lives of patients.
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