-Ibrahim Suleiman, Ph.D
June 19 was World Sickle Cell Awareness Day. The theme of this year’s international awareness day was “shine the light on sickle cell”.
Valuechain Sickle Cell Foundation is a nonprofit organization that has been educating the public on sickle cell disease in Nigeria. The organization understands the challenges experienced by patients, their families, and caregivers. That is why the organization has been rendering support, especially to the less privileged patients and families requiring assistance with clearing medical bills, donations of drugs, and medical utilities.
The disease is most prevalent among the black race. Nigeria is the most populous black nation, it also has the highest number of sickle cell cases. About 100,000 – 150,000 new cases per year, equivalent to about 35% of annual global cases of sickle cell disease. These figures imply that Nigeria occupies a strategic position in the epidemiology of the disease from a global perspective. However, Nigeria needs to do more in championing the advocacy by laying strategic policies aimed at supporting people living with sickle cell anemia, their caregivers, and their families.
As part of this year’s World Sickle Cell Day event, the organization shined the light by reaching out to the general public through radio appearances and visits to the hospitals.
Sickle cell disease is an inherited disorder. Passed from parents (who may either be carriers or affected) to their offspring. In sickle cell disease, the shape of the red blood cell is distorted.
The red blood cells forms major components of our blood. There are usually round (spherical) and flexible. Their flexibility make it easy for them to pass through different sizes of blood vessels. Their main function is to transport oxygen.
In sickle cell anemia, the shape of significant amount of red blood cells are sickle or crescent moon shape. Sickle cells are less flexible and very sticky, thereby finding it difficult to move through some smaller blood vessels. The distortion in their shape prevents them from carrying enough oxygen to all parts of the body, slows blood flow and causes occlusion of certain blood vessels.
In sickle cell anemia, the reduction in blood flow and lack of enough oxygen in the blood of the patients, coupled with shorter life span of the blood cells leads to symptoms such as excruciating pain, fever, cough, laboured breathing, pale skin, fatigue and many more. Newborns usually don’t show symptoms, it starts to show from five months of age and above. The risk of developing other health complications exists as they grow older.
The only cure for the disease is for carriers of the genotype to avoid giving birth. Though medical advancement has ushered in a remedy called stem cell transplant, whose cost is currently beyond the reach of many ordinary people. The best way of staying away from health crises is to adhere to certain preventive measures such as avoiding cold environment, limiting exposure to infections, taking regular sips of water at intervals, avoiding exhaustion due to intense physical activity among others.
In their bid to improve patients’ accessibility to basic healthcare, Valuechain Sickle Cell Foundation has promised to enroll a good number of patients from underprivileged families in National Health Insurance Scheme as a pilot project. The beneficiaries will no longer worry about the huge cost of their daily medications in order to manage their condition as it will be greatly subsidized by the health insurance scheme. This is part of the foundation’s way of “shining the light on sickle cell” patients as we all mark this year’s event.
Ibrahim Suleiman Ph.D is a Senior Lecturer of the Faculty of Medical Sciences, University of The West Indies, Barbados