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World Sickle Cell Day: Breaking the clutches of the deadly disease cycle

By  Yusuf Hassan Wada

AS we commemorate World Sickle Cell Day on June 19 every year, we create awareness about the clutches of the deadly Sickle Cell Disease, SCD, a disease that has brought untold hardships and misery upon many families, a disease that has stolen the joy from the childhood of many children.

Sickle Cell

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While 70 per cent of the world’s population are carriers, Nigeria has the highest burden of Sickle Cell Disease, SCD, in the world and is also the top sickle cell endemic country in Africa, with an annual infant death of about 150,000, representing more than eight per cent of infant mortality in the country. With every 1,000 babies born in Nigeria, 20 are born with Sickle Cell Disease, which means that they carry the SS genotype.

The term ‘Sickle Cell’ describes a group of inherited red blood cell disorders. In sickle cell disease, the red blood cells become hard and sticky and looks like a C-shaped farm tool called a sickle.

Sickle cells die early which causes a constant shortage of red blood cells. Normal red blood cells can live between 90 to 120 days in the blood circulatory system, but sickled cells die after only about 10 to 20 days. The hard and pointed red cells go through the small blood tube, they clog the flow and break apart which cause pain and damage.

However, awareness of the disease with its consequences is very limited, and so are the treatment options or cure. Nigerians in rural and urban areas seem to be unaware of the existence of genotypes or the importance of a genotype test and genotype compatibility.

Many people don’t know that for each pregnancy in which both parents are AS, there is a 25 per cent chance of them giving birth to a child with the sickle cell genotype.

These actions and inactions eventually affect such families physically, financially and psychologically if they give birth to a child with SCD. To those who have plans of getting married, do your best not to gamble with the life of your child even before he/she is born.

To all stakeholders in the fight against SCD, this is a wake up call to us all that the choices we make before marriage can save our unborn children from Sickle Cell Disease. Know your partner’s health status, before you plan to start a family.

That notwithstanding, if you already have a child with SCD, you should not give up but should rather have some few things in mind.

Parents should, therefore, give them all the love, motivation, education and healthcare that they need and not see them out of frustration as some transient beings who do not deserve any worthy investment. They are a blessing from God, which some people are not privileged to have, and for that matter all children should be treated as the precious gifts that they are even if they have SCD.

Parents should also know that with advancement in healthcare, having SCD does not mean the child is bound to die today, tomorrow, next week, next month or next year.

As these concerted efforts are being made towards reducing the SCD prevalence, government must, as a matter of urgency, place SCD in the country national health agenda and people must be informed on how to avoid giving birth to sickle cell children.

Government and private funders must be willing to develop sickle cell centres in Nigeria. This would serve as centres where parents, patients and intending couples would have access to expertise and knowledge about the disease and as a result would be able to receive supportive care for the SCD patient.

Government needs to also develop a system that will help build a database of people with SCD. This will be helpful to the government, advocacy groups, NGOs and stakeholders committed to addressing issues related to their health, educational, financial and psycho-social needs of all affected persons and families.

With renewed focus and commitment, the time is now to help break the sickle cell disease chain and the cycle of pains and build a healthy society. People with sickle cell disease and those with sickle cell trait and their families and friends deserve an effective support system. Let  us continue with the good fight and play our roles effectively to make sure SCD haunts nobody in the near future. Nigeria must also be ready.

*Wada, a public health advocate, wrote from the Usmanu Danfodiyo University, Sokoto.

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