Health

The burden of sickle cell disease

Unfortunately, children with SCD can’t even tolerate games/co-curricular activities, extreme weather conditions and are highly susceptible to all sorts of infections, hence making them fulltime hospital candidates depriving them their social life.

According to the 2021 World Health Organization (WHO) report, approximately 5% of the world’s population carries trait genes for haemoglobin disorders with mainly sickle-cell disease. Sickle cell disease (SCD) is a serious condition caused by a single gene mutation that affects the haemoglobin. This condition is highly prevalent in Sub-Saharan Africa where approximately 300,000 babies are born annually with the disease.

Sickle cell disease has devastating consequences in relation to infant mortality; morbidity including stroke, kidney damage, and pulmonary hypertension and diminished quality of life. The health burden of SCD and other haemoglobin disorders can be effectively reduced through management and prevention programs.

Uganda was documented among the first African countries with large burden of SCD in 1949. In Uganda, approximately 20,000 (70-80%) of children born with SCD die before their 5th birthday. This limits progress to UN sustainable development goal 3, which includes reduction of childhood mortality.

Currently, Eastern Uganda has the highest prevalence (17.5%) of SCD which is attributed to reasons not clearly understood. However, avoidance of intermarriages has been documented to reduce the burden of sickle cell disease as seen in Bundibugyo district after 60 years. Bundibugyo had the world’s highest prevalence of sickle cell trait, which has dramatically fallen down. 

Sickle cell disease has taken a tall on the Ugandan population today especially our children, burdening individuals, families, communities and government with families with sickle disease spending over 60 percent of their time in hospitals. The WHO published the need to improve sickle cell awareness, diseases prevention and early detection. Therefore, it’s everyone’s responsibility to increase awareness and fight off SCD in our respective communities.

Sickle cells disease is associated with complications such as severe anemia requiring blood transfusion services which are not easily accessible and at times unavailable in most health facilities, leaving patients with no choice but to die. Also, families with children &/or relatives with SCD suffer poor quality of life, frequent hospital visits, poverty, and inadequate time to participate in developmental work with decreased life expectancy compared to the general population.

Unfortunately, children with SCD can’t even tolerate games/co-curricular activities, extreme weather conditions and are highly susceptible to all sorts of infections, hence making them fulltime hospital candidates depriving them their social life.

We, therefore, recommend the Government of Uganda through the Ministry of Health and other Sickle Cell Disease Associations and NGOs’, religious and cultural leaders, and other relevant stakeholders to add more efforts in comprehensive community awareness and sensitization about Sickle Cell Disease.

The authors are; Kasadha Nasser; a general practioner and the Chairperson BCMCH graduate society of Uganda (Kasadhanasser99@gmail.com) and 
Ms. Lilian Nuwabaine Luyima; BSc Nurse & MSN-Midwife & Women’s’ Health Specialist working with Aga Khan University &Heroes in Health Awards winner-Midwife of the year 2021

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