Sickle cell disease deserves more attention

The United Nations (UN) designated June 19 as World Sickle Cell Awareness Day. It was first observed by the UN General Assembly in 2008 to highlight the sickle cell disease (SCD) for people to know and feel the pain and the trauma that a patient suffering from the disease goes through.

SCD, otherwise known as sickle cell anaemia (SCA), is basically an inherited disease in which the red blood fails to circulate the required amount of oxygen in the body. Usually, the shape of the red blood cell is round or. However, in those with SCD, the shape is in the form of the crescent moon or sickle. Due to this, they find it difficult to move in the body. They are usually stuck in small blood vessels which restrict the flow of blood to different parts of the body.

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Normal red blood cells usually live for about 120 days before being replaced, but in patients with SCD, the cells die in 10 to 20 days, causing a shortage. And without enough red blood cells, the body cannot get enough oxygen thereby resulting in pain and fatigue.

For a child to be affected, both parents must pass the defective form of the gene. In Nigeria, and as in the rest of the world, the Sickle Cell Day provides an avenue to increase public knowledge and an understanding of the disease and the challenges experienced by patients, their families and caregivers.

The theme for 2021 day: “Lift Every Voice to Shine the Light on Sickle Cell”, is aimed at raising the voices and experiences of victims and caregivers within the SDC community.

The disease has a debilitating effect on global health. For example, official data show that more than 1,000 babies that are born with the disease die before reaching the age of five.

It is widely spread in Africa and the United States, where more than 90,000 to 100,000 people are affected. In addition, countries like India, Saudi Arabia, Turkey, the Arabic Peninsula, Brazil, Surinam, Guiana, Southern Italy and Greece also have sizeable numbers suffering from the disease.

However, the good news about SCD is that it is not contagious, but without a definitive cure yet. So, with early diagnosis, adequate and constant monitoring and treatment of the patient, SDC effects could be controlled.

Sadly, till date, there is not enough awareness of the disease and how to properly care for the sufferers, hence something must be done to change that.

And because the disease is passed through the gene to children, the importance of prospective couples conducting test to check their genotype to ensure compatibility before marriage cannot be overemphasised. It is a good thing that some religious leaders have made such test a requisite for joining couples. That should be sustained, and those who are not yet doing such should start. The pain that the sufferer bears is enormous. Therefore, all effort must be made to avoid it.

And in extreme cases, those who can afford should explore the only procedure which can change the genotype, the Bone Marrow Transplant (BMT). But the BMT, although proven to be the promising permanent cure for SCD, is new and expensive.

The stigma and myths surrounding the disease must be discarded and those diagnosed should avoid self-medication. Their parents should seek knowledge on the management of the illness. There is also need for Nigeria to engage in the training of medical personnel in this field to provide the needed expertise. Modern equipment and technologies should also be procured to conduct precise diagnosis and support treatment.

Therefore, we urge government to support people living with the disease by enrolling them in the National Health Insurance Scheme (NHIS). In addition, the Federal Ministry of Health should embark on research that will lead to the provision of vaccine to tackle the disease. This disease is predominantly an African disease and we cannot keep waiting for the West to provide the solution.