By Sola Ogundipe
TWENTY one year-old Afolayan Abayomi Azeez was born with Sickle Cell Disorder. The 400 level Chemistry undergraduate of the University of Lagos who hails from Abeokuta North Local Government of Ogun State is currently volunteers for Genotype Foundation.
Currently on internship, Azeez is a writer and advocate for sickle cell awareness. “Some of my articles on sickle cell disorder have been published. I am also writing an autobiography. I just want to people to know about the disorder.
“My parents both have AS genotype, they have three children out of which two of us are SS. I am the last born. Growing up with sickle cell disorder was challenging however since I became mature I’ve not really had much crisis. I no longer experience all the complications that sickle cell patients normally experience again.
“There were just one or two events that were significant. I had one crisis in 2016 and spent eight days in the hospital. I actually missed my exams because of the crisis. Then not quite long after wards, I had a complication called avascular necrosis (AVM). I’m still battling that.”
As a volunteer for Genotype Foundation, Azeez helps in advocacy and awareness creation for health programmes such as sickle cell disease.
“I need hip replacement surgery for the AVM. I want to do that at the cost of N1.5 million at the Lagos State University Teaching Hospital, LASUTH, but doctors have not really placed me on the surgery. I was told that every 10-15 years, the new hip may wear off and would need to be replaced again so they are waiting for me to grow a little older before it is done. I don’t mind if it can be done even now and replaced later.”
Speaking during the 2018 annual debate and awareness creation organized by Genotype Foundation for students in selected secondary schools in Lagos State to know their genotype, Azeez wants Nigerians to know that the disorder is real.
“We ought to know our genotype before getting married. This is not about bringing to the world a child that has sickle cell disorder and using love to conquer the problem. Love does not conquer some complications of sickle cell disorder. Psychological effects such as addiction and depression are not managed with love.
“ It is better to prevent the problem than to manage it. We have to know our genotype before getting into relationship or marriage. However, for people like me that are living with sickle cell disease, you can live a successful and fruitful life. It is possible.”
Sickle Cell Disorder is a chronic yet treatable genetic disorder that is caused by the presence of an abnormal form of haemoglobin in the red blood cells—haemoglobin S (HbS) instead of haemoglobin A (HbA). Babies are born with the disorder when a baby inherits two copies of a defective gene from each patient Nigeria currently has the world’s largest burden of sickle cell disease.
Approximately 150,000 babies in Nigeria are born with the disorder every year while approximately four million Nigerians are healthy carriers of the sickle cell trait. Of 1,000 live births in Nigeria, 20 infants have the disease. This is by far the largest burden of the disorder anywhere in the world and most of these children will die in childhood from ignorance and lack of access to proper diagnosis and care.
Essentially, sickle cell disease is a disaster waiting to happen. It is an incurable genetic disorder, with a particularly daunting picture in Nigeria, which paradoxically, is the most affected country but also the least equipped to deal with the disorder. In several ways, Nigeria is not the best place to be born with sickle cell disease.
The greatest tragedy of the disease is that half of children born with it are likely to die before age of five. Children with sickle cell are highly vulnerable to infections and often suffer pain in their hands and feet. There’s no cure. However, there are treatments that have reduced the death rate among children and the levels of pain caused by the disease.
Children become victims of the sickle cell disorder because of their parents. Assuming a man and woman both have sickle cell trait (AS), their child has a 25 percent chance of being born with sickle cell anaemia.
If only one of partner has the sickle cell trait, the child cannot be born with sickle cell anaemia, but there is a 50 percent chance that the child will be born with sickle cell trait. If one parent has sickle cell disease (SS) and one parent has sickle cell trait (AS), there is a 50 percent chance that their children will be born with sickle cell disease. So the best prevention is to go for a simple blood test before marriage to avoid this problem.
In the views of the Founder and President of the Genotype Foundation, Mrs Doris Gbemiloye, all Nigerians should be concerned by the presence of sickle cell disorder in society. “The idea of taking care of persons with the disorder, preventing, reducing, and controlling, the infection and addressing the ignorance through public awareness and educational campaign is necessary. We are organizing this debate among students to sensitise them early so that they can make informed choices and also sensitise others.”
Students from five Junior Secondary Schools and 13 Senior Secondary Schools from five districts in the State participated in the debate. The topic for debate was entitled ‘Should Genotype be a Deciding Factor Before Marriage?’
“When the children know the importance of genotype test at this age, in future they would make better decisions and in doing that we are reducing the incidence of bringing in to the world more children with sickle cell disorder and as time goes on with more awareness and campaigns, the incidence of sickle cell disorder would reduce drastically.”
According to Gbemiloye: “The students have done their research and know what they are talking about. I know this generation of students would be able carry the message across. They are already secure in genotype issues and even if they are carriers of the gene would make informed choices. The next level is our youth conference which will be to ensure that those that do not know their genotype would do so and inform others so that the awareness continues.”
Gbemiloye said the plan is to get the concept into the education curriculum. “Sickle cell devastates the life of a child. They could have crisis at anytime and miss exams if the school does not understanding. Principals should understand the situation so that they can make provision for the affected students and take proper care of them. People should go out there and know their genotype and also make the right decision when it is time to choose a life partner.”