In Uganda, an alarming 15,000-20,000 babies are born annually with sickle cell anemia. Tragically, 80% of these newborns do not reach their 5th birthday. Many local communities in Uganda still attribute this phenomenon to witchcraft or view it as a spiritual curse, associating it with adultery. There is a prevailing belief that sickle cell children have a life expectancy of less than 20 years, resulting in inadequate care.
Sickle Cell Disease (SCD) is a genetic hemoglobin disorder where red blood cells, responsible for carrying oxygen, change from a normal doughnut shape to a sickle and abnormal half-moon shape. This change is caused by the substitution of valine for glutamic acid at the 6th position of the beta chains in a hemoglobin molecule. This genetic mutation produces abnormal hemoglobin (Hbs), causing sickled red blood cells to easily crystallize in conditions of low oxygen tension, leading to various health problems such as acute and chronic severe pain, infections, anemia, organ damage, and stroke. Symptoms usually manifest between the ages of 3-6 months.
Carrier couples (HbAHbs, HbAHbs) have a 25%, 50%, and 25% chance of bearing a sickler, carriers, and normal children, respectively.
Uganda ranks 6th in Sub-Saharan Africa for sickle cell disease prevalence due to limited knowledge, low rates of pre-marital screening, and expensive diagnostic tests. This crisis not only causes long-term misery for families but also burdens the economy. Limited budgets leave communities without access to free hydroxyurea, a vital drug for SCD management. Due to financial constraints, many turn to local herbs, worsening their health and prognosis. Hydroxyurea tablets, costing between one thousand to one thousand five hundred shillings (UgShs. 1000-1500), become unaffordable for most sickle cell families.
Challenges and Solutions:
Water damage restoration for affected homes becomes an additional challenge, further exacerbating the plight of sickle cell communities. Social stigmatization and marginalization contribute to challenges faced by sickle cell communities, affecting school attendance, academic performance, work productivity, leading to depression, family breakups, and neglect.
Vocational skilling initiatives, such as tailoring, could provide sustainable financial support for these communities. Rehab doctors are essential in addressing the unique health needs of sickle cell patients.
Religious Institutional Initiatives (RIIs), advocating for pre-marital sickling tests for prospective couples in holy, civil, and cultural marriages, could significantly help prevent this issue. While costly treatment modalities like Apheresis and bone marrow transplants exist, intense health education can raise awareness and unite communities in the fight against this silent killer in Uganda.
Medical practitioners specializing in genetic disorders play a crucial role in early detection and management. Uber Health could facilitate transportation for sickle cell patients to access medical facilities. Weight loss clinics may offer additional support to improve overall health.
Author:
BARNABAS SSEKAWU
MEDICAL CLINICAL OFFICER
ENVIRONMENT HEALTH OFFICER
SICKLE CELL ACTIVIST
