OBJECTIVE: TO PROMOTE INCLUSION OF PEOPLE LIVING WITH SICKLE CELL IN COMMUNITY ACTIVITES
From an unpublished study carried out by the USCRF in 9 schools in areas of Mukono district indicated that 90% of the secondary school students believed the children with sickle cell disease should not be in school. This was further concretized in another study in Lusazze a kampala suburb where 68.3% of the respondents indicated that persons living with sickle cell cannot work and they wouldn’t marry them. This is attributed to the misconception that Sickle Cell is contagious. In schools, families, workplaces and communities the person living with sickle cell is often stigmatized and discriminated. This means that they will mostly be excluded in community activities and children are denied education and other rights because society believes they are not well enough to go to school and not eligible enough to work as normal people hence denied of some opportunities to live a normal life.
We are working with districts, local governments, the Ministry of Health, religious denominations to promote sickle cell awareness and sensitization so that we encourage society to include people living with sickle cell in community activities. Given the stigma and social discrimination people living with sickle cell disease in Ugandan communities it is incumbent upon us to promote their inclusion in community initiatives. We are currently working with the Rubirizi District Sickle Cell and Physical Disability Association (RDSCPDA) in this initiative.
Through awareness and sensitization on stigma and discrimination, we have managed to educate society to look at sickle cell not as a disease but a condition that can be dealt with given the right atmosphere and management. With RDSCPDA; 20 % of the 200 families have their persons living with sickle cell actively involved in various community activities hence contributing to the development of society.