Medical experts observe that Sickle Cell Disorder (SCD) remains one of the main causes of premature death among children under the age of five in various African countries. They, therefore, solicit intense campaign to increase public knowledge and raise awareness of the disease during the World Sickle Cell Awareness Day, writes NAOMI SHARANG
The Sickle Cell Foundation Nigeria, SCFN, said sickle cell disease is the commonest inherited sickness in the world and three quarters of cases occur in Africa. The experts also stress that Nigeria needs to take active part in the awareness campaign going by the statistics from the World Health Organisation (WHO) that the country has higher percentage of sickle cell sufferers.
Corroborating this claim, Dr Baba Inusa, a consultant in blood disorders and children’s medicine, observed that Nigeria had the largest population of people with SCD in the world with around 150,000 babies born with it every year.
“It is estimated that only 50 per cent of children with SCD live past the age of 10 in Nigeria, compared to over 96 per cent surviving into adulthood in the UK and U.S.,’’ he said. He, nonetheless, admitted that SCD also affected millions of people around the world, including adults and children.
He agreed that SCD was a disorder of the blood caused by inherited abnormal hemoglobin –the oxygen-carrying protein within the red blood cells. According to him, the abnormal cells are unable to move around as easily as normal shaped cells and can block blood vessels, resulting in severe pain.
Dr Ajibola Sanda, the director, Clinical Services of Sickle Cell Foundation, said that the trouble was that people with sickle cell trait are often unconscious of the condition if they had not been tested. He explained that the best management of the disorder was when the diagnosis was carried out at early stage.
“Early detection is very important in the management of a child with the disorder because it has been found that people who tested early are better prepared. Parents who know that their children have SCD early enough should quickly begin a regime of drugs, adapt their lifestyles and get the prescribed vaccines,” Sanda said.
He insisted that the adequate knowledge and information of the disease and its impending risks could prepare a family for the challenges ahead. “Such a family can prevent illness by developing a meal plan that aids health, sleeping under mosquito nets and by taking steps to prevent dehydration,” he said.
But Mr Olayemi Onijala, the Head of Laboratory Department of the foundation, said that the prevalence of the disorder in Nigeria was declining due to some level of awareness and information.
“More than 40 million Nigerians are healthy carriers of the sickle cell gene, while more than 150,000 babies are born each year with SCD; this figure shows a decrease. This is the largest burden of the disorder in the world and most of these children die in childhood because of ignorance and lack of access to correct diagnosis and proper care,” he noted.
He observed further that one in 14 children with SCD has high risk of developing stroke, saying that the stroke could be prevented by identifying it from onset. “With modern ultrasound scanning machine at the foundation, we can identify and prevent stroke in these children,’’ he said.
He also added that “Bone marrow or stem cell transplant is the most effective cure for SCD and it is most affordable. Stem cell transplant is aimed at introducing stem cells that will regenerate normal red blood cell progeny,” he said. He also called on the National Assembly to ensure speedy passage of the Sickle Cell Disease (Prevention, Control and Management) Bill.
“The bill seeks to provide a legal framework for the prevention, control and management of SCD. It aims at drawing the attention of the public to the health burden arising from the disorder in Nigeria,’’ he noted. Stressing the burden of the disease, Dr Anthony Usaro, the National Coordinator, Non-Communicable Disease Division, Federal Ministry of Health, said SCD contributed to maternal, neo-natal and child mortality in Nigeria which, he noted, undermined the attainment of Millennium Development Goals. He, however, said that the ministry had developed comprehensive national guidelines for the control and management of the disease.
“SCD affects all human systems; the clinical management of patients with the disease is multi-disciplinary. The guidelines would facilitate uniformity and standardisation of care across different disciplines,” he said. For prevention of the disease, Usaro said the guidelines would focus on screening of new born, pre-marital counseling and registration of SCD patients. He said the ministry was collaborating with sickle cell support organisations to carry out research on effective and affordable treatment of the disease.
According to him, the ministry has established six SCD screening centres in Abakaliki, Lagos, Gombe, Keffi, Yenagoa and Birnin Kebbi for effective management of the disease. Usaro described SCD as “chronic and expensive” to treat, adding that it placed socio-economic burden on the sufferer, their family and the community.
To buttress this, WHO reports that the recurrent pain and complications caused by SCD can interfere with many aspects of the patient’s life, including education, employment and psycho-social developments. Further to creating awareness on the disease, Medikka Journal of the University of Nigeria Medical Students, advises individuals to be tested for presence of the gene before pregnancy and marriage.
It says if both partners are carriers, couples may seek genetic counseling to help them better understand SCD and how it will affect children they may have. By and large, observers note that since 2008, World Sickle Cell Awareness Day has been holding on every June 19 to increase public knowledge and raise awareness of SCD and its negative impacts on the sufferers and their families.
They advise that “even if you cannot attend one, you can spend the day to do research on the illness, learn about the signs, symptoms and increase your understanding of its impact”. (NAN)