Sickle Cell in Uganda is a major public health problem with poor visibility and low, awareness, a situation that will persist if patients continue to be hidden away in families.

Uganda was among the first countries in Africa with a documented large burden of Sickle Cell Anemia. In 1949, substantial differences in the prevalence of Sickle Cell trait were reported between different tribes, ranging from less than 5% for Hamites in the southwest to more than 20% for the northern Nilotices (Lango and Acholi). Some Bantu tribes had even higher rates, including 45% among Bamba living in the western region.

Yet we have no high functioning nonprofit organizations that can raise awareness and spread the message and draw attention to the extent of homozygous Sickle Cell (SS) disease as a public health problem in Uganda. Data showed an enormous burden, with sickle cell trait being present in all 112 districts assessed. Prevalence was highest in the Mid Northern and East Central regions. Overall, the prevalence of sickle cell trait was 13·3%, but it was more than 20% in eight districts. Among babies aged 6 months or younger, the overall prevalence of sickle cell trait was 13·2% and of disease was 0·8%, which suggests that at least 15 000 babies per year are born with Sickle Cell in Uganda. 

Worldwide, sickle haemoglobinopathies lead to a substantial burden of disease that is not adequately addressed. Accurate data is lacking, but the worldwide estimate for neonates born with Sickle Cell each year is 400 000, including 300 000 with Sickle Cell anaemia. The greatest burden is seen in sub-Saharan Africa, where more than 75% of all sickle cell disease occurs, with this proportion projected to increase by 2050. In Africa, sickle cell disease contributes substantially to mortality in children younger than 5 years.

A later study, however, has suggested lower values. Of note, though, both studies were based on small samples and were not representative of the whole country

So, hopefully within the next year I plan on starting a foundation in my late brothers name specifically for this cause that afflicted him, my sister, me and thousands/millions in Uganda and globally.