The Sickle Cell Awareness Foundation (SCAF), on Tuesday, called on all stakeholders to focus more on research, as against prevention and sensitisation.?
The group’s Policy Adviser, Nkechikwu Azinge, said Nigeria has the highest prevalence of the disorder in the world. ?
?Everyone is concentrating more on awareness, prevention and treatment, but no one is really concentrating on research for cure, and it is alarming because Nigeria actually has the highest population of sickle cell patients in the world, not just in Africa,” she said.
?And I don?t think much is being done about it. I know that there is a bill proposed to be passed on sickle cell, and that might actually help research. I hope that would promote research. I would like to commend a sickle cell foundation in Lagos, I think they are doing quite a lot on research too.?
?UBTH, some few months ago, actually carried out the first stem cell transplant, and in National Hospital Abuja, they actually sent some students out for stem cell transplant–they are trying to learn and bring back to Abuja.?
?So on that basis, I will say that little is done, but that there is remarkable progress to some extent.??
Azinge said 150,000 Nigerian children were born each year with the disorder, stressing that more than 100,000 of them died before the age of five.?
?20 in every 1,000 new born babies in Nigeria have sickle cell. Out of the 200,000 fresh cases recorded in Africa annually, 150,000 were Nigerian. Most of these babes don?t celebrate their fifth birthdays.??
According to her, statistics showed that the level of awareness for sickle cell anaemia was low, and more children would be born with the disorder if preventive measures were not in place.?
She said prenatal diagnosis would enable a pregnant woman to know if she was carrying a baby with the disorder.?
?If you tell a woman that you can test a baby in the womb to tell whether the child will be AA or SS so as to terminate the pregnancy, she may object or not,” she explained.?
?Some Muslims may not have a problem with that because when it?s not yet a foetus, you can terminate it, but some Christians may say it?s an abortion.?
?So, I think that it really depends on the personality involved, and also religion has a huge role to play.??
Azinge spoke of the need for persons suffering from the disorder to live healthy lives and for Nigerians to be educated more on their genotypic status, as it would make them plan their lives well.
