There are over 500 individuals in Campania affected by thalassemia, a genetically determined hemoglobin deficit that leads to a blood oxygenation deficit. According to data transmitted solely from the Cardarelli Hospital, from the Aou (University Hospital) Vanvitelli, from the San Giovanni di Dio and Ruggi d'Aragona Hospital in Salerno, and from the Umberto I Hospital in Nocera Inferiore, 495 cases of people affected by thalassemia have been detected. Of these, 295 suffer from a form of the disease that makes them transfusion-dependent (53 in pediatric age and the remaining 242 adults) but in Campania, there are 450 transfusion-dependent individuals out of seven thousand on a national basis, 704 is the total number of patients from Puglia affected by thalassemia: 536 are transfusion-dependent, 60 with an intermediate transfusion dependence, and 108 who do not require this type of approach.
In Puglia, Brindisi is the city that, according to data communicated by the Microcythemia Center of the Hematology Department of Perrino Hospital, records the highest number of cases, with 124 people affected by thalassemia, of which 78 are transfusion-dependent, 23 with an intermediate dependence on transfusion, and the remaining 23 exempt from this practice. Beta-thalassemia is as mentioned a hereditary blood disease, which involves low levels of hemoglobin and therefore poor oxygenation of tissues, organs, and muscles resulting in a state of fatigue and limited growth. In Italy, about 7,000 people live with this pathology, of which a good 73% are dependent on periodic blood transfusions.
Shedding light on thalassemic patients in Naples and all of Southern Italy is FITHAD, the Italian Foundation "Leonardo Giambrone" for the cure of Thalassemia Onlus, a non-profit entity for research and treatment of Thalassemia and Sickle Cell Disease. The goal is to breach into a little-known world, only imagined and definitely experienced with considerable burdens and discomforts in everyday life by hundreds of patients and their families.
This and more will be discussed in a meeting open to the public and all interested citizens on March 5th at the Royal Continental Hotel (starting from 3 pm) where patients and their families will talk about the impact of transfusions on the quality of life of those suffering from Beta Thalassemia and those around them. The meeting - named BConfident, realized with the unconditional contribution of Bristol Myers Squibb, thus intends to focus on the psychological aspects and those related to the quality of life of those affected by thalassemia, debunking the myths about the treatments currently available that do not eliminate the dependence on transfusions with the aim of supporting patients in an everyday life dictated by the therapies and transfusions necessary to treat a chronic disease that accompanies the patient from childhood. Focus on the value of time in beta thalassemia with the intent to create opportunities for constructive and positive confrontation among those involved in the care path for this pathology. Mutual listening will be the thread that will allow patients to share their reality, stories, expectations, and hopes, the value of time taken from them by therapies to family life and in relationships among peers and between friends, spouses, children, so as to define the impact on their own quality of life, but at the same time address and debunk the myths and perplexities regarding the therapeutic options currently available to patients. Over the years, scientific progress has made treatments increasingly effective and able to reduce the burden of transfusions, reducing fatigue and the weight of anemia and at the same time freeing up time translating into an improved quality of life from a psychological, emotional, and social perspective for patients and caregivers.
The meeting will see the participation, in addition to the patient association FITHAD - Italian Foundation "Leonardo Giambrone" for the cure of Thalassemia Onlus, also of a psychologist, clinicians who interact daily with the disease, but the undisputed protagonists will be precisely the patients. The goal is to debate and confront around such an impactful theme in Southern Italy, discuss how to manage daily life and face the burden of transfusions, and identify the main issues related to the pathology and its treatments. The meeting will also be available via streaming. To participate and for more information, the following link is available: bconfident.it/napoli.
The ultimate goal of the project is to share the unmet needs of the patient affected by beta-thalassemia and dependent on transfusions and the consequent impact that transfusions have on his quality of life, giving rise to active communication between clinicians, patients and their associations in order to debunk the myths about the treatments currently available, gather both the doctor's and the patient's experiences, analyze the psychological implications of the disease, providing informative material, actively listening to the contribution of patient associations.