“Time and Beta-thalassemia: The Burden on Patients and Caregivers”
Patients living with beta-thalassemia and their caregivers face a unique challenge that affects their daily lives and psychological well-being. The disease requires them to dedicate countless hours to therapies, from frequent transfusions to regular check-ups that become a constant part of their lives. This burden was highlighted at the meeting “Parallel roads: the meaning of time in beta-thalassemia” organized by Site, the Italian Society of Thalassemia and Hemoglobinopathies, in collaboration with Vertex Pharmaceuticals.
During the event, the results of a national survey conducted on patients and caregivers in Sicily were presented. The data collected from 128 participants revealed the significant impact of beta-thalassemia on their lives. Patients spend an average of 3 days a month on medical visits, often requiring a companion for support. The disease affects various aspects of their personal lives, including the ability to travel, work, and manage daily activities. The majority of participants expressed feelings of needing help, renunciation, and the need to reset their lives due to the illness.
Dr. Giovan Battista Ruffo, director of Hematology and Thalassemia at the Civico Di Cristina Benfratelli in Palermo, emphasized the challenges faced by the 1,803 Sicilians living with beta-thalassemia. He highlighted the need for effective treatments and improved healthcare services to ease the burden on patients and their families.
According to Raffaella Origa, president of Site, the survey findings underscore the importance of providing better access to healthcare, information, and support for patients living with beta-thalassemia. The new booklet “Strade Parallele. Stories of life with beta-thalassemia” was launched as a tool for raising awareness and sharing patient experiences.
Dr. Rosario Di Maggio, medical director of Hematology for rare blood diseases, commended the courage and resilience of patients who navigate the challenges of living with beta-thalassemia. Their stories serve as a reminder of the strength and determination required to lead a fulfilling life while managing the demands of the disease.
The meeting shed light on the struggles faced by individuals with beta-thalassemia and the importance of providing comprehensive support to improve their quality of life. By addressing the time-consuming nature of the disease and offering tailored solutions, healthcare providers and organizations can make a meaningful difference in the lives of patients and caregivers.