Sickle Cell Disease (SCD) is among the world’s most common serious inherited diseases with more than 300,000 annual births, particularly most of them are born in sub-Saharan Africa. The outcome of SCD in low-middle income countries is grim: less than 50% of affected births will survive beyond the 10th birthday.
The sickle-shaped red blood cells cause a range of complications, including severe pain, acute chest syndrome, stroke and other organs damages.
Fondazione Gianni Benzi is involved as project coordinator, in the African Research and Innovative Initiative for Sickle cell Education - ARISE project that aims to improve the overall SCD outcomes in Nigeria, Kenya and Lebanon, where the disease incidence is very high, establishing a multidisciplinary staff exchange programme between researchers among partners.
One of the missions carried out by Fondazione Gianni Benzi is to transmit accurate and reliable information of interest of patients and citizens promoting their active participation in the management of their disease.
In this framework, the Foundation has developed the booklet “Living well with Thalassaemia” and currently is working on the booklet “Living well with Sickle Cell Disease” in collaboration with the ARISE consortium , to increase the awareness of the African communities about the SCD.
The booklet will be a tool for patients and people with sickle trait, aimed at providing accurate, clear and easy to understand information on the disease in form of concrete answers and useful suggestions.
The booklet will allow the reader to understand more about the disease, in terms of its pathogenesis, diagnosis, symptoms, complications and available treatments.
The patient's direct knowledge of the numerous problems associated with this disease can help them to “live well” with the disease, seeking timely care and facing the disease preventing severe complications.