Sickle cell anaemia is an inherited blood disorder that affects millions in Nigeria, with about 4-6 million people suffering from the condition and approximately one in four Nigerians carrying the sickle cell trait.
The disorder fundamentally alters the shape and functionality of red blood cells, transforming them from their normal, circular, and flexible form into rigid, crescent-shaped cells.
This seemingly small change has profound implications for those affected, as it significantly hampers the ability of red blood cells to traverse the body’s capillaries, leading to blockages and reduced oxygen delivery to vital organs and tissues.
Patients struggle
According to Mariya Bagudu, a dedicated storyteller, and filmmaker, who leverages her talents to advocate for social change and uplift marginalized communities, a key complication of this impaired blood flow is the vaso-occlusive crisis, or sickle cell crisis, characterized by severe pain, organ damage, and a myriad of other health issues due to oxygen deprivation.
“Unlike normal red blood cells, which have a lifespan of about 120 days, sickle cells last only 10 to 20 days. This rapid turnover results in a chronic shortage of red blood cells, causing persistent anaemia.
“This anaemia manifests as fatigue, lack of energy, and other symptoms that severely affect the quality of life of individuals with sickle cell disease.”
“One of the most perilous complications of sickle cell disease is the splenic sequestration crisis. As sickle cells accumulate in the spleen, they cause it to enlarge rapidly.” She added.
Bagudu further said this condition is not only excruciatingly painful but also dangerous, as it drastically reduces the number of healthy red blood cells in circulation, leading to severe anaemia and potentially life-threatening complications. Additionally, sickle cells can block blood flow to the spleen, causing splenic infarction. This damages the spleen, impairing its function and increasing the risk of infections, given the spleen’s crucial role in filtering harmful microorganisms from the blood.
Sickle cell patients also face the risk of acute chest syndrome, which arises from blockages in the lungs’ blood vessels, leading to chest pain, difficulty breathing, and decreased oxygen levels.
Another common complication is avascular necrosis, particularly affecting the hips and shoulders, where insufficient blood flow leads to bone damage. This condition causes significant pain, joint problems, and mobility issues. Strokes are also a grave risk, resulting from blockages in the brain’s blood vessels caused by sickle cells, leading to reduced blood flow and oxygen delivery to the brain.
The impact of sickle cell disease is profound and relentless, starting from childhood. Unlike their peers, children with sickle cell disease cannot engage in typical activities like playing, as physical exertion often leads to fatigue and illness. Something as innocuous as playing in the rain can necessitate hospitalisation.
Even the weather presents challenges; exposure to the sun can cause dehydration, leading to a crisis, while rain can trigger illness. Simple activities such as walking become daunting tasks due to the rapid onset of fatigue.
Children with sickle cell disease are often instructed to drink plenty of water to stay hydrated, but this leads to frequent bathroom visits. In a school setting, this can be particularly disruptive, with teachers sometimes denying restroom requests due to their frequency.
Sickle cell impact on patients
Bagudu said regular school attendance becomes impossible, hampering academic progress. On most days, even basic movements are painful, making walking or moving limbs a struggle.
The social impact is equally devastating.
Participation in extracurricular activities, sports, and other forms of play is often out of the question, leading to social isolation. Plans with friends are frequently canceled due to unexpected pain episodes, and the lack of understanding from peers exacerbates feelings of loneliness.
Emotional well-being is intricately tied to physical health; excessive joy or sorrow can trigger a crisis, leading to a constant state of anxiety about when the next painful episode will strike.
Moreover, sickle cell patients endure significant emotional and psychological burdens. The stigma associated with the disease can lead to depression, with patients often facing unkind remarks and unfair labels.
Food allergies further complicate daily life, and the small size of their veins means that each hospital visit involves multiple, painful needle pricks. The fear of death looms large, with the unpredictability of their condition—feeling healthy one moment and requiring intensive care the next—adding to their distress.
The pain of living with sickle cell disease is immense and multifaceted, affecting every aspect of life. From physical
pain and fatigue to social isolation and emotional turmoil, the challenges faced by sickle cell patients are profound and often invisible to those around them. Understanding and empathy from society are crucial in alleviating some of the burdens they bear, and it is imperative that more attention is given to improving their quality of life.
Mariya Bagudu is a multifaceted creative artist dedicated to promoting the Sustainable Development Goals (SDGs) and fostering community development. As a writer, storyteller, and filmmaker, she leverages her talents to advocate for social change and uplift marginalised communities.
