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OUR STORY

Joanne Chazima Sickle Cell Foundation operates in line with the World Health Organization’s approach to sickle cell disease prevention and control which supports:

(i) Primary prevention (genetic counseling and general public knowledge)

(ii) Early detection via screening to reduce morbidity and clinical care of special groups that is children and pregnant women.

According to United Nations Educational, Scientific and Cultural Organization (UNESCO), Sickle Cell Disease (SCD) is the most frequent genetic disease worldwide. It is present on four continents: in sub-Saharan Africa and in the Maghrib, in Asia (Middle-East, Arabic peninsula, India), in the Americas, on the North (USA), centre (Guatemala, Caribbean islands), and on the South (Brazil,Surinam, Guiana), in Southern Europe (Southern Italy and Sicily, Greece, Turkey). It is estimated that 500.000 are born every year with this severe and invalidating condition and that 50% of them will die before the age of 5 years. Trans-continental, SCD is also trans-ethnic and affects black populations from African origin and Arabic, Indian and Caucasian populations from Southern Europe.

Through advocacy of the Sickle Cell Disease International Organisation   (SCDIO), the support of the Republic of Congo and the Republic of Senegal, and the commitment in the scientific world, the African Union (in 2005), the UNESCO (2005), WHO (2006), and the United Nations (2008) recognized sickle cell disease as a public health priority.

Objectives

Joanne Chazima Sickle Cell Foundation was established to meet the following objectives:

  • To provide healthcare services to people with SCD
  • Set up Sickle Cell Centres in areas prevalent with SCD
  • Create awareness about SCD to both those living with the disease and those taking care of them
  • Ensure successful management of SCD

In Kenya alone, two out of every 10 newborns have the disease, with six to eight of them dying before their fifth birthday. “This is indeed a national shame. This is a major medical concern, as most are never diagnosed. SCA is an unrecognised leading contributor to high infant deaths,” said Prof William Macharia of the Aga Khan Hospital

(Standard Newspaper, 19th June 2015).