“Living with Beta-Thalassemia: A Daily Struggle for Patients and Families”
Beta-thalassemia, a hereditary blood disease, affects thousands of people worldwide every year. The condition is caused by a defect in the production of beta-globin, a component of hemoglobin responsible for transporting oxygen to the tissues. This results in severe anemia, enlarged spleen, severe growth slowdown, and bone abnormalities.
The treatment for patients with beta-thalassemia involves repeated transfusions and the use of drugs to remove the iron that accumulates in the tissues. This is necessary for those with transfusion-dependent beta-thalassemia to survive, but it can also lead to excessive iron accumulation in the body and damage to vital organs. Patients must regularly undergo continuous blood transfusions, which can have a profound impact on their lives and the lives of their loved ones.
Raffaelle Origa, President of the Italian Society of Thalassemia and Hemoglobinopathies (SITE), explains that while advancements in treatment have improved life expectancy for those with beta-thalassemia, the need for daily therapies and frequent hospitalizations continues to impact patients and their families.
In Italy alone, there are at least 7 thousand people with the disease, with 73% of them requiring transfusions. This places a significant burden on thousands of families, who must manage the care and checks required for the disease. In many cases, a caregiver is needed for patients during transfusions and visits, often a parent.
The impact of beta-thalassemia on patients’ lives is significant. A new information campaign called “Parallel Roads,” initiated by SITE, aims to raise awareness of the burden that the disease and its treatment can have on patients and their families. The campaign aims to highlight the fact that patients with beta-thalassemia spend an average of 3 days a month receiving transfusions and visiting specialists, totaling 36 days in one year. This means dedicating a significant amount of time and effort to managing the disease.
According to the ongoing survey conducted by Elma Research, the dimension of time plays a fundamental role in the experience of patients with beta-thalassemia. Patients under 20 years of age commonly experience feelings of incomprehension, confusion, and discouragement, while those between 20 and 45 face loneliness and stress. For older patients, fatigue is the most prevalent challenge in their lives.
The survey results shed light on the daily struggle faced by individuals living with beta-thalassemia and the impact it has on their lives and the lives of their families. The “Parallel Roads” campaign aims to raise awareness of the challenges faced by those with the disease and to provide support and understanding for patients and their loved ones.