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‘Pain and penury of sickle cell disease not beyond science’

By CHIOMA OBINNA

ON this year’s World Sickle Cell Day, June 19, 2012, government at all levels, civil society and well meaning Nigerians are reminded to show concern for people living with Sickle Cell Disorder, SCD, as “the pain and penury associated with the disorder is not a secret locked up beyond science”

SCD, a set of red blood cell disorders that are mostly inherited, affects people all over the world and the complications that arise from it are usually fatal. Experts say in the red blood cells become tough and sticky and resemble “sickles”.

The infected cells perish early which leads to a constant depletion of red blood cells in the blood. Further as the blood moves through blood vessels, these infected cells get stuck to the walls and obstruct the blood flow which leads to more complications. But with good medical care people with sickle cell disease can live into adulthood but with a decreased life expectancy.

The World Health Organisation, WHO ranks Nigeria as the country with the highest number of sufferers of SCD in the world. About 30 per cent of Nigerians are carriers of the mutant gene, with the prevalence rate at 20 per 1,000 births.  The carrier frequency ranges between 20 – 30 per cent of the Nigerians population; it means that more than 30 million Nigerians are carriers.

According to clinical records, SCD is inherited from both parents and is usually caused by some abnormalities in a type of haemoglobin called haemoglobin-S.

For now, no known cure exists for sickle cell disease; the main goal is to prevent further complications due to sickle cell disease. The main emphasis is hence on educating medical professionals, care givers, and associated personnel about prevention, research, and resources to minimise the complications due to sickle cell disease. Hence June 19th is devoted mainly to spread awareness, through talks, seminars, pamphlets, literature and consultations.

In line with UN resolution, Chairman, Dabma Sickle Cell Foundation, Pastor Emmanuel Ibekwe, in a message to herald this year’s event tomorrow, says people living with sickle cell disease in the society remain the weakest as little or no attention is paid to their plight.

The theme for  this year is “Empowering Individuals Living with Sickle Cell to Live Life to the Fullest”.

Ibekwe, who opined that though suffering is universal as breathing, notes: “Though the choice is yours, but the right of the unborn child must be preserved.  It is important for  government to know that a truly human society well Governed, benchmarks the people under their ruler ship to see those who are the weakest.

A major torch bearer of sickle cell education, he adds that his experience-based foundation was established after the death of his daughter, Angela Chidimma Dickson, to highlight the complications of the disorder while extending awareness to millions of people around the world.

He says SCD is preventable with the right approach and advocates the need for a National Intervention Fund, NIF, a heightened advocacy and painstaking research for solution, he argues: “We must look inward for medicinal plants that abound in the nation for cure.”

He calls for the need to replicate the attention such as that given to HIV&AIDs should be extended to SCD as part of strategies to restore confidence in the Nigerian sufferers in order for them to reach their full potentials in life.

“Dabma Sickle Cell Foundation’ has been writing and publishing books based on experience in serial format.  Some of which are “Cruel wounds of Sickle Cell Anaemia a family experience, the challenges of sickle cell disorder in Nigeria, and Sickle cell disorder early warning signals, the last two awaiting public presentation and launch.

“These books are a guide for the public, counsel to would-be couples, and encouragement to families who are under this trauma, those in guilt, anxiety, or shock.  They underline how family members can be of assistance to their challenged siblings and a guide to informed decision and right choice in marriage.”


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