Fondazione Benzi has always been engaged in activities addressed to the needs of patients with haemoglobinopathies, by working in close collaboration with the patients’ organisations, both at national (Fondazione Italiana “Leonardo Giambrone”) and local (Associazione Italiana Thalassemici – Sez. Prov. Bari) level.
In this framework, a new initiative on blood transfusions and on the value of the blood donations, that has gained in importance in the current circumstances, was launched. You can consult the infographics here!
This is because COVID-19, in addition to being a threat to all patients especially those suffering from chronic diseases, including Thalassemia and Sickle Cell Disease, has negatively impacted on the access to treatments. Instead, it is crucial to ensure that patients have access to this care in a safe and continuous way!
In particular, blood transfusions are life-saving treatments for these patients and now more than ever this kind of treatment is challenged by the pandemic. The situation gets complicated when patients are positive for the virus. Therefore, additional measures must be implemented to ensure that they receive the treatments they need.
It is important to listen and give the voice to the patients that faced and are currently facing this experience. A representative of Associazione Italiana Thalassemici – Sez. Prov. Bari agreed to share with us the patients’ point of view:
“The life of a patient with Thalassemia has been marked since birth by continuous blood transfusions (every 15-21 days), by daily chelation therapy and periodical visits to the hospital. Despite this disease makes life very complicated, the thalassaemic patient does not give up on achieving the objectives such as studying, professional fulfilment, starting a family, marring and having children.
Therefore, for each patient blood represents the essence of life, being able to achieve your life projects and having an active role in the society. That is why blood donors are life donors!
However, during this pandemic something has changed. There are less donors (maybe due to the fear of catching the virus or other reasons), thus blood has become an even more precious and rare gift.
The impact on patients’ life is devastating because, besides of the disease burden to be borne, there is the angst of not being able to have the transfusion due to the lack of donors and blood. This is a tough period for everyone but we as thalassaemic patients live with the persistent concern of not being able to access to treatments and particularly to the life-saving transfusion therapy.
Today my plea as patient to all the candidate donors is to not be afraid to donate and to be brave, because having courage does not mean not being afraid but it means being aware that beyond that fear there is something greater for which it is still worth donating blood: a human life!”