Professor Adeyinka Falusi, a retired professor of Hematology, University of Ibadan, is the Executive Director and founder of Sickle Cell Hope Alive Foundation (SCHAF). In this interview by OLAIDE SOKOYA, she speaks on the role we all have to play to prevent sickle cell anaemia.
WHAT is the aim and objective of Sickle Cell Hope Alive Foundation (SCAF)?
SCAF was established in June 2012 to create awareness about sickle cell anaemia and support education and genetic screening in order to prevent the disease in Nigeria. Another reason for starting it is because we can’t close our eye to those who have been born with the disease. There are over 4 million Nigerians who are carriers of the disease, which is why awareness is the main key on how they can prevent the disease. The next part is to look after those who have been affected. We are here to educate them and care for the victims. We assist them in procurement of their drugs and empower them because most people don’t employ them. Thirdly, we are carrying out research on what really causes this disease and how it can be totally eradicated.
In what ways do you think government can help to eradicate this disease?
Nigeria carries the highest burden of sickle cell disease. We have the largest population in Africa and that is why we also have the highest rate of sickle cell. So, government must put something concrete in place. The first step government can take is to have a work plan. Every state, city and local government area must have a work plan of its own which must be funded by the government. A proper budget will step down sickle cell in Nigeria. In doing that, we need to have centres where every child in Nigeria will have the correct genotype and blood group by nine months. It should not be done in just any hospital, because there are equipment you need to have to get correct diagnoses. What we have in many hospitals will suffice, but can never give correct diagnosis. Once someone is totally diagnosed at the age of one year, the genotype will never change till he gets old. Genotype test is not something you need to be repeating. Lastly, the government should have a curriculum change in the education sector. We should stop following the same curriculum we were using five years ago. Government should introduce a chapter covering this topic in the student’s curriculum from primary to tertiary institutions.
Can you share with us your experience as a female professor?
It was not an easy road. I had a very rough road; there is nothing you get in this life that you won’t pay the price. It is not easy to become a professor; if you want to become one, you have to work for it, especially as a woman. It requires serious hours in the laboratory, reading and researching. I didn’t work to become a professor. I was just doing what I liked doing steadily, because if you are saying you want to become a professor like your friends, I bet it with you, you won’t become one. I was just doing it to prove that what a man can do, a woman can do much better. I was also lucky; the lecturers that supervised my work were also supportive. Now that I have become a professor, doors are opening with so many awards here in Nigeria and overseas.
What can parents do to curb sickle cell anaemia?
Parents are the main keys in preventing the disease. The first thing is that as parents, you need to know your genotype and have it at the back of your mind that the family needs to live a healthy life. You have to know the consequences of having a child that has SS and the repercussions, so they should first know the status of the person they want to marry. For instance, two “AS” should not marry. When you have a child, the first thing to do is to have the genotype of the baby but by nine months, it would be clearer and certain. Also, parents with SS children should also take proper care of them. They should be allowed to play with friends, go to school like normal children but they must be guided. They should not be allowed to play in the rain or walk in the sun. The teachers of such children must also be aware of their status because the teachers also have many roles to play. They should behave nicely to them.
What is your advice to all?
We all have a role to play in reducing sickle cell anaemia disease because we all inherited genes. These genes are the blood we keep transferring to our children. So, each person should know about his/her genotype. Everybody must know his blood group and genotype so that when kids starts coming, you will know where to belong. The youths should be well educated about sickle cell anaemia and they too should read widely about it. The teachers in school should also know how to take good care of sickle cell patients; they should move close to them. The government too should help in equipping our government hospitals with adequate, free drugs for sickle cell patients.
and then