In Uganda, about 15,000–20,000 babies are born annually with sickle cell anaemia. Unfortunately, 80% of these newborns don’t get a chance to celebrate their fifth birthday in life. Most local communities in Uganda still believe that this phenomenon is due to witchcraft; others think that it’s a spiritual curse and punishment for adultery, whereas many believe that sickle cell children have a life expectancy of less than 20 years, hence rendering sicklers less care.
The fact remains that sickle cell disease (SCD) is a genetic haemoglobin disorder in which red blood cells, which carry oxygen around the body, change shape from a smooth doughnut shape (normal) to a half-moon shape (sickle and abnormal). This change is caused by the substitution of valine for glutamic acid at the 6th position of the beta chains in a haemoglobin molecule. This genetic mutation produces abnormal haemoglobin (Hbs), which causes sickled red blood cells to easily crystallise in conditions of low oxygen tension, hence leading to a host of various health problems and crises, including but not limited to acute and chronic severe pain, infections, anaemia, organ damage, and stroke. Symptoms of the disease mostly appear to occur between the ages of 3 and 6 months. A carrier couple (HbAHbs, HbAHbs) possesses a 25%, 50%, and 25% chance of bearing a sickler, carriers, and normal children, respectively.
Ssekawu Barnabas (sickle cell activist) interacting with & delivering hydroxyurea to a sickle cell family in Namugongo, Kira Municipality
Uganda remains a high-sickle cell disease, ranked 6th in Sub-Saharan Africa. This is attributed to less knowledge about this disease, lower rates of pre-marital screening, and expensive screening and diagnostic tests. This catastrophe not only leaves families in long-term misery but also burdens the economy and GDP of the country. Following a limited budget to cater for communities suffering from this condition, many lack access to adequate free hydroxyurea, a very potent drug needed in the management of SCD as always prescribed by health professionals. This results in many resorting to local herbs, further deteriorating their health and hence their disease prognosis. A key element to note is that one tablet of hydroxyurea costs between one thousand shillings and one thousand five hundred shillings (UgShs. 1000–1500), and a patient takes one per day as a minimum start. This makes it almost unaffordable for most sickle cell families, which are already financially overwhelmed by this chronic illness.
Photo showing Sickle Cell Children with their caretakers and activists during a sickle cell disease community awareness campaign
Social stigmatization and marginalization are some of the many challenges sickle cell communities face, victims also experience poor school attendance, academic performances, low work productivity rates, depression, family breakups and neglect which has led to an increase in single-mother parenting, GBV among others. Vocational skilling like tailoring to sickle cell communities would offer self and sustainable financial support and solutions to these communities. Religious Institutional Initiatives (RIIs) like vivid encouragement of pre-marital sickling tests for prospectus couples before holy marriages and the same for civil and cultural marriages would significantly help in the prevention of this vice. Other treatment modalities like Apheresis and bone marrow transplant exist but remain very costly for an ordinary Ugandan who survives on a food-to-mouth economy. Through intense and purposeful health education, communities can be made aware of how we can all come together to fight and end this silent killer in Uganda.
Author
BARNABAS SSEKAWU
MEDICAL CLINICAL OFFICER
ENVIRONMENT HEALTH OFFICER
SICKLE CELL ACTIVIST
