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SICKLE CELL DISEASE, A SILENT KILLER IN UGANDAN COMMUNITIES.

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By BARNABAS SSEKAWU

In Uganda, about 15000-20000 babies are born annually with sickle cell anaemia. Unfortunately 80% of these newborns don’t get a chance of celebrating their 5th birthday of life. Most local communities in Uganda still have a belief that this phenomenon is due to witchcraft, others think that it’s a spiritual curse and punishment to adultery whereas many believe that sickle cell children have a life expectancy of less than 20years 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 & 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 cause sickled red blood cells to easily crystallize in conditions of low oxygen tension hence leading to a host of various health problems and crises including and not limited to, acute and chronic severe pain, infections, anaemia, organ damage, stroke. Symptoms of the disease mostly appear to occur from the age of 3-6months. A carrier couple (HbAHbs, HbAHbs) possess a 25%, 50%, 25% chance of bearing a sickler, carriers and normal children respectively.

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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 prevalent country as its ranked 6th in Sub-Saharan Africa. This is attributed to less knowledge about this disease, lower rates of pre-marital screening, expensive screening and diagnostic tests. This catastrophe not only leaves families in long-term miseries but also burdens the economy and GDP of the country. Following limited budget to cater for communities suffering from this condition, many lack access to adequate free hydroxyurea, a very potent drug needed in management of SCD as always prescribed by health professionals. This results into many resorting to local herbs which further deteriorate their health and hence poor disease prognosis. A key element to note is that one tablet of hydroxyurea costs between one thousand shillings to one thousand five hundred shillings (UgShs. 1000-1500) and when a patient takes one per day as a minimum started. This makes it almost unaffordable to most sickle cell families which are already financially overwhelmed by this chronic illness.

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Photo showing Sickle Cell Children with their care takers and activist during a sickle cell disease community awareness campaign

Social stigmatization and marginalization being one of many challenges sickle cell communities face, victims also experience poor school attendances, academic performances, low work productivity rates, depression, family breakups and neglect which has led to 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 test for prospectus couples before holy marriages and the same for civil and cultural marriages would significantly help in 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 food-to-mouth economy. Though 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.

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Sickle Cell Awareness Walk

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Author
BARNABAS SSEKAWU
MEDICAL CLINICAL OFFICER
ENVIRONMENT HEALTH OFFICER
SICKLE CELL ACTIVIST

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