Building an Educated Sickle Cell Community...
It is our firm belief that as socially-responsible citizens, corporations and agents of public enlightenment, we have a responsibility towards building an educated, enlightened and action-based society, which is why our project - Secondary Schools Sensitisation Program was established. This program specifically targets the developing gap of our youth in order to shape the narrative - a Sickle Cell Aware & Conscious mind. This responsibility does not solely rely on our healthcare or health institutions but also on individuals, families, schools and other various institutions. As a Sickle Cell institution whose number one agenda is to enlighten the public on the dangers of incompatible unionism and the disease itself, we choose a target audience who we believe is the baseline as well as key to hear and be heard, to see and be seen and to speak and be spoken to.
Throughout 2018, our Teams have carried out a sensitisation excercise in various Secondary Schools across the country. Schools who participated include but are not limited to Government Secondary School Gwagwalada (and its Sickle Cell Club), Unity Secondary Schools, Wisdom International College, Government Girls Day Secondary School, Funtua, to mention a few.
In addition to sensitisation, we themed this year's program to be both as educative as it should be enlightening through essay writing. Each school participating forwarded essay written by their students on their views of handling or dealing with Sickle Cell Disease and its implications in their communities. Needless to say that one voice resonated through many perspectives; the message remains the same - know your genotype before becoming parents.
"Spreading awareness in communities"
As a Sickle Cell Awareness advocate, Gloria Ralph, a Student of GSS Gwagwalada shared with us during this year's Secondary Schools Sensitisation & Writing competition program, her views on being a Sickle Cell advocate in her community.
It is no secret that Nigeria has the world’s largest population of people with Sickle Cell Disease (SCD), a genetic disorder due to the presence of an abnormal form of haemoglobin in the red blood cells – haemoglobin S (HbS) instead of haemoglobin A (HbA). Every year, about two percent of babies in Nigeria are born with Sickle Cell Disorder, SCD, translating to no fewer than 150,000 children. Out of this number, estimated 100,000 infants die due to the disorder.
Unfortunately, the ideal management and treatment for the disorder remains a tall dream in Nigeria as most of those affected have been rendered poor due to the cost involved. The lack of support from government has contributed largely to non-compliance to treatment by some people living with SCD.
As a result, the establishment of sickle cell centres in every State of the Federation had become inevitable to reach the unreached and underserved patients, particularly those in the rural communities. With proper treatment and counselling, Nigerians living with Hb SS can be able to live good and pain free life.
Furthermore, the Ministry of Education should include Sickle Cell education in the schools curriculum, so that from primary level children will have the necessary knowledge about the disease and can also educate their parents who are not exposed to such health problem.
In addition, Religious institutions must include genotype screening as part of their premarital counselling topics for would-be couples. Religious leaders should focus their attention on having a positive attitude towards the disease, as well as gaining knowledge on the disease to influence people to have genotype testing and premarital counselling as a way to prevent SCD. With time, no Nigerian will go into a marital relationship without adequate understanding of their genotype status.
Equally, traditional rulers should use their status as the custodian of their community’s customs and traditions, in identifying culprits, who are headstrong on solemnising their union even when they know it would produce sickly suffering children, and refusing them traditional marriage rites.
In conclusion, the society can provide support for those living with SCD by making provision for public health insurance for sickle cell patients to enable them access quality healthcare in discounted rate, as well as to decrease the menace of the disease. The National Health Insurance Scheme (NHIS), which made provision for the treatment of the disease at some extent, had only captured a small number of Nigerians who are public servants at the federal, state and local government levels, with no provision made for non-government workers and the underprivileged masses. Today, the rate and the cost of hospitalisation for children with SCD and the percentage of income spent on hospitalisation are too high for most communities in Nigeria, hence, the need for Government to strengthen the NHIS and subsidise the cost of care for people with SCD.
Gloria Ralph is a founding and current member of the Sickle Cell Club of GSS Gwagwalada, and by honor of shared mutual agenda, a SSSCFoundation Young Advocate 2018.