Knowledge, perception and practices towards sickle cell disease: a community survey among adults in Lubaga division, Kampala Uganda

Sharifu K. Tusuubira, Ritah Nakayinga, Bashir Mwambi, John Odda, Sylvia Kiconco, Alimah Komuhangi

Worldwide, the burden of Sickle Cell disease (SCD) has not been amply addressed. In Africa, Uganda has the 5th highest burden, a situation aggravated by limited and inaccessible formal social support structures to aid patients and families cope better with the psychosocial burden of SCD. In addition, this has been coupled with stigmatization and discrimination of people living with sickle cell disease causing isolation from family and society. This cross sectional study therefore set out to determine the attitudes, perception and level of awareness towards Sickle Cell disease in Ugandan communities. The study used an interviewer administered questionnaires to collect the data. Out of 110 people sampled; 91.2% of the respondents had ever heard of SCD with the highest proportion 38.7% hearing of SCD from friends and family. Close to half of the respondents 48% knew that SCD is inherited, however a large proportion 44.2% did not know the cause of SCD. However, 68.7% of the respondents said they cannot marry a person with SCD. The study results indicate that more effort needs to be done to promote sickle cell awareness in Uganda communities with emphasis on the inclusion of sickle cell in health education campaigns.