The Sickle Cell Foundation Nigeria is a non-profit organization in Lagos, Nigeria that aims to improve the quality of life for people with sickle cell anaemia and decrease the impact of the disease in the community. They support more than 600 children who live with sickle cell disease, and they provide a focus for laboratory and clinical research. This is an important organization that provides much-needed funding for medical research. To learn more about their work, visit their website.
Sickle cell anaemia
According to WHO, one out of every twelve babies in Sub-Saharan Africa is born with the inherited blood disorder sickle cell anaemia. The disease is a leading cause of death and disability among children. In Nigeria, an estimated 150,000 babies are born with the sickle cell anaemia each year. In addition, Nigeria accounts for almost half of the 300,000 children in the world born with sickle cell disorder. There is no cure for the disease, but there are treatments and prevention measures to improve the lives of patients and families affected by this disease. Treatments are generally focused on the prevention of sickling episodes and the management of pain and discomfort associated with the disease.
The new law will help reduce the prevalence of sickle cell anaemia and improve treatment. The government will also fund research to develop better treatments and cures. The new bill will allow the Ministry of Health to accredit and supervise hospitals that specialize in treating sickle cell anaemia. The bill will also provide access to affordable treatments that are effective in reducing the incidence of death caused by the disease.
In Northern Nigeria, pregnant women are less likely to receive sickle cell disease diagnoses. Despite this, the sickle cell foundation in Nigeria has made prenatal diagnosis an option. The HBI program offers care and testing close to the pregnant woman’s place of residence. This model also integrates screening for sickle cell disease with existing antenatal care and health infrastructure. In Northern Nigeria, underutilization of antenatal care is higher.
The benefits of prenatal testing for genetic diseases cannot be overstated. Despite the great benefits of prenatal diagnosis, prenatal screening for genetic diseases is still not routinely practiced in Nigeria. It has to be carried out ethically, but the study also assessed the attitudes of pregnant women to genetic tests. It also evaluated their willingness to have their babies tested for diseases during pregnancy and the use of common tests. It also assessed their readiness to terminate pregnancies affected by genetic disorders.
The Treatments for Sickle Cell Foundation Nigeria aims to help patients find the best treatment options available. The foundation is led by Prof. Olu Akinyanju, a retired nurse and a champion of inclusive policies in Nigeria. He says the goal of his organization is to reduce the number of deaths associated with SCD. In addition to providing treatments, the foundation also provides educational programs to educate patients about their condition.
The prevalence of SCD in Nigeria is alarming. The disease affects approximately two out of every hundred children in the country. It is one of the most common genetic disorders, affecting over three-quarters of patients. Currently, the condition is incurable, but treatments for sickle cell disease can help prevent sickling episodes and related complications. Most of these treatments are pain management and comfort measures that help patients manage their condition.
Quality of life
Quality of life is one of the primary goals of treatment for sickle cell patients. The International Sickle Cell Disease Organization (ISCD) reaffirmed the primary focus on quality of life in a recent assessment study. Among the objectives of the study were the determinants of health-related quality of life, the financial burden of the condition, and the social and emotional wellbeing of the sickle cell patient. Using a questionnaire developed by Burckhardt and Anderson, the study evaluated the quality of life of sickle cell disease patients.
The study estimated that a simulated population of SCD patients would live 22 years less than a matched non-SCD cohort. This translates into a decrease in life expectancy of over 3 decades. Moreover, SCD patients lost nearly $700 000 in lifetime income compared to their non-SCD counterparts. In addition, they were also significantly less likely to have a family life and work as compared to the matched non-SCD cohort.