Sickle Stick (name still TBD) focuses on the idea that all individuals with sickle cell disease should be able to live a fulfilling life. The opening slide depicts how sickle cell disease reduces life expectancy (the blood cells shown at the top of the graphic are sickle-shaped and stick together, causing blood clots); however our dream is that sickle cell patients are able to live fulfilling, long lives similar to individuals with normal blood (normal blood cells shown on the bottom of the graphic).
The low education on prevalence, causes, symptoms, and management, the absence of screening programs, and diagnostic capabilities, and the limited access to treatments (financially, availability) are the underlying systemic problems preventing people in result in Sierra Leone with sickle cell disease from living long fulfilling lives. In Sierra Leone, 50-90% of individuals with sickle cell disease will die before the age of 5, and most of these children are never even diagnosed. Children who do live long enough to present with symptoms often still remain undiagnosed. If sickle cell disease is suspected patients receive little to no guidance on how to handle symptoms and usually don’t have access to proven, cheap treatments because of the low education, lack of diagnostic capabilities, and limited access to treatments. These three undressed problems results in a large loss of life as well as low qualities of life (increased risk for infection, frequent pain crisis and stigma) for the patients who are left untreated.
Our solution focuses on a systemic change. By implementing a newborn screening program, individuals with sickle cell can be identified before they present with symptoms, and can start treatments early when they are most effective. Our solution will also incorporate a life-long treatment and education program which will allow the individuals to manage their symptoms, and live fulfilling lives. By collaborating with other sickle cell ventures in Sierra Leone, this solution can be implemented at a national level.