The Shikuri Project is a registered Non-Profit corporation (501c3) in the United States, dedicated to providing sustainable, Chronic Health Care Management (CHCM) programs to reduce mortality and morbidity of young children with Sickle Cell Disease, IN KENYA, AND EVENTUALLY UNDESERVED COMMUNITIES IN SUB SAHAREN AFRICA (SSA)
It will achieve the expected results primarily through technical-assistance project management with heavy reliance on partnerships including South-South technical cooperation. Sickle-cell disease (SCD), an inherited disorder of the red blood cells, is the most prevalent genetic disease in Sub-Saharan Africa (SSA). The World Health Organization (WHO) estimates that 50%–80% of infants born yearly with SCD in Africa die before the age of five years, which is the most vulnerable period of the disease. While death is usually from an infection, stroke, or severe anemia, the complications of the disease affect and kill young children before doctors even suspect that they have the disease. Survivors suffer end-organ damage which shortens their lifespan, and they remain vulnerable to exacerbations of the disease and the complications mentioned above. Persons with SCD are often stigmatized, and SCD has major socioeconomic implications for affected persons, families, communities and nations.
The good news is that WHO estimates that 70% of SCA deaths in Africa are preventable with simple, cost-effective interventions such as early identification of SCA patients by newborn screening (NBS) and the subsequent provision of comprehensive care.
Screening programs for SCD, initiated in the United States and Jamaica, have led to sharply reduced mortality and morbidity of the disease in young children. Despite the fact that the United Nations has declared SCD as a Public Health Priority for SSA, as an important cause of child mortality in many African countries, there is negligible investment in public health programs. In SSA adequately trained health professionals, specialized health care facilities, effective medicines, vaccines and safe blood transfusion are very limited. There is a dearth of reliable data which can perhaps account for the lack of attention to the disease. In Kenya there are no well- structured care services for early SCD diagnosis and follow up in the highest affected areas. Since 60 % of birth deliveries in the endemic areas do not occur in health facilities, the target group has negligible access to, and is beyond the reach of health care management services. .
The Shikuri Project is therefore establishing a pilot CHCM project in 2 undeserved communities of Kenya where the disease has highest prevalence. It will deliver 4 Deliverables of the WHO Strategy for Sickle Cell Disease designed to reduce infant mortality and suffering by at least 50 percent. The Shikuri Project will function synergistically with national and international partner organizations within Kenya’sQuality Model for Health. Based on the success of the pilot project, the program will expand to other communities. A fund-raising and marketing strategy will be developed for project operations, and to advocate for its goals. This will target access to grants and expertise from Foundations, other Not for Profit organizations, Government agencies, and donations from the general public. Please join us to raise resources and implement this program to save the lives and promote greater well being of affected children, their caregivers and communities.
I was born with sickle-cell disease in Kenya, but was not diagnosed until I was adopted by my mom when I was 2. Since then, I received the best medical care; and my hospitalizations for painful crises, life threatening infections, and pneumonias have reduced from seven episodes per year to one or two. I am now 14 and just a loving, troublesome kid who has so much to celebrate. Most kids with Sickle cell disease in Africa die before they are 5 years old. Through The Shikuri Project, we are helping diagnose and treat other children in Kenya and East Africa, born with sickle-cell disease, so they too can live to be 14 & beyond!