Water, local herbs key in managing crisis
Forty-eight-year-old Ayoola Olajide is living well with sickle cell anaemia (SS). Olajide, the Editor of African Sickle Cell News and World Report, and author of Menace In My Blood- my affliction with sickle cell anaemia is married to a woman with the AA genotype (without the SS trait) and they have three boys (AS, without anaemia but are carriers). Olajide, a journalist, is on a crusade to address the genetic disorder through aggressive public enlightenment. Olajide spoke with CHUKWUMA MUANYA on how he is living well with the virus. He said Nigerians with sickle cell could live well into old age if they have the right information and others could avoid having children with the condition by making the right choices.
THERE has been a lot of hype about the African Sickle Cell News and World Report, as well as, the Hope Alive Sickle Cell Association. Why?
The African Sickle Cell News and World Report happens to be the only dedicated Sickle cell magazine in the world. The magazine was set up principally to address the issue of sickle cell from the public awareness angle. Nigeria is, so to say, the world sickle cell capital because Nigeria has many more people living with sickle cell than some countries combined.
Now we are lagging behind in terms of research, we are lagging behind in terms of really taking to heart the matter of sickle cell in our daily living. The society stigmatises people with sickle cell, they run away from them and sometimes they are even rejected at work. You do not want to employ them because of the possibility of frequent illness.
Now, if we cannot do all that Nigeria can be in the forefront of sickle cell enlightenment, which is what I personally want to do which I have been doing in the past five years since setting up the Sickle Cell News and World Report. Hope Alive Sickle Cell Association is a non-governmental organisation championing the course of Nigerians living with sickle cell.
What is your dream and vision as regards to sickle cell management, treatment and possibility of cure? And reason for establishing this?
Let me start with the cure angle. There is no known cure for sickle cell since it was described over 100 years ago. Up till now despite all the research and medical advancement, there is no known cure except for one, which is called the bone marrow transplant, which is extremely expensive. It is not something an ordinary person can face, only governments can say okay, let us sponsor a child or two for experimental purposes.
I know of many people, who are producing sickle cell medications in West Africa, who say so and so medication can change your genotype from SS to AA or from AS to AA or whatever. It is all lies. I also known of churches, high-profile churches, they claim to be able to cure sickle cell or even cured some sufferers. We did a story on that, we investigated and discovered that all such claims were completely false. We took some of the claimants to the laboratory and found that their genotypes remained the same. Sickle cell genotype does not change. So the aim for setting up the magazine is to put Nigeria in the forefront of sickle cell public enlightenment, if we cannot be at the vanguard of research, we can at least do something.
What prompted you? Are you affected?
What really prompted me is personal experience because I am living with the condition myself. I was diagnosed at the age of about 30 months with the condition. I have since then gone through primary, secondary and university education, but it was not easy at all.
On occasions, there would be exams and I would fall ill. I remember during the West Africa School Certificate Exams (WEASCE) in 1978, it was during the Economics paper that I had a serious crisis and was not able to write the paper. I failed it and I had to retake the paper largely because of that moment of crisis.
The inspiration to start this project came from personal experience because when you experience sickle cell you do not want to see it in others. You know it is a painful condition, which people get into largely out of ignorance. Our parents in those days, when they got married, they knew nothing about sickle cell but these days, information technology is just a click away on the mouse on sickle cell.
Why don’t people become more aware? I know friends, journalist friends, who have children with sickle cell. I even know doctors, who have children with sickle cell. At least people should make an informed choice and know what they are getting into before they start bearing children or getting into marriage.
Are you married?
Yes I married.
Do you have children?
Yes I have children.
Are they sickle cell patients?
I was moving with a girl about 24 years ago, 1988, and the relationship was getting serious. At a point I decided I will like this girl to be my wife but I did not tell her about sickle cell. I took her to the laboratory and when the result came out, I saw AS on the result slip. A sort of cloud just passed over my face and she asked, “what is the matter?” “What is wrong?” I answered, “nothing. Lets go home.”
When we got home I told her my genotype is SS, you are AS there is no way I will continue with a relationship like this. If I did not have sickle cell I think I would have risked it. If I were probably only a carrier like her, I would have continued the relationship. It is easy if you are a carrier only to discountenance or to take it lightly with sickle cell but if you live with it, you don’t joke with it. You know it is not a joke.
Eventually, I did not marry that girl just because of her sickle cell carrier status. She cried and said, ‘even if it is just one child we are going to have, why don’t we have that child.’ I said, ‘look, your reasoning is one-sided. What if that only child will come down with the condition just like me? How can I fall into crisis and the child might ask me, ‘dad you know about this before getting me into it?’
At a point, I told the girl that we cannot go on but she insisted on carrying on with the relationship. I stood my ground. Eventually, we did not marry because of that. I eventually married a woman with AA status.
So you have children now?
Yes.
How many children?
Three boys.
How have you survived these 48 years because you look very healthy? If there are any particular herb, food or lifestyle you adopt?
That is a very difficult question. If I should tell you this is what I take, this is the herb I take, this is my lifestyle I would be a liar. I think everything in life is according to the grace of God. I am not what you call a Christian. I am not a religious person but I know that there are forces behind all the things you see. I know that it is just simply the grace of God. But let me not say just that alone, the grace of God first and foremost then other auxiliary things come in next.
I take my medication regularly. I take my anti-malarials. I am sorry to say that I don’t believe in oyinbo (western) anti-malarials. I take our own African herbals - agbo, Yoruba agbo, and I take lots of water. Water is good for everyone but particularly for people with sickle cell. It helps to improve our blood. The blood tends to clog together but when you are not dehydrated it flows freely within the body. I think that is the principal thing. I take lots of water. Water is my main medication.
The Guardian news
Forty-eight-year-old Ayoola Olajide is living well with sickle cell anaemia (SS). Olajide, the Editor of African Sickle Cell News and World Report, and author of Menace In My Blood- my affliction with sickle cell anaemia is married to a woman with the AA genotype (without the SS trait) and they have three boys (AS, without anaemia but are carriers). Olajide, a journalist, is on a crusade to address the genetic disorder through aggressive public enlightenment. Olajide spoke with CHUKWUMA MUANYA on how he is living well with the virus. He said Nigerians with sickle cell could live well into old age if they have the right information and others could avoid having children with the condition by making the right choices.
THERE has been a lot of hype about the African Sickle Cell News and World Report, as well as, the Hope Alive Sickle Cell Association. Why?
The African Sickle Cell News and World Report happens to be the only dedicated Sickle cell magazine in the world. The magazine was set up principally to address the issue of sickle cell from the public awareness angle. Nigeria is, so to say, the world sickle cell capital because Nigeria has many more people living with sickle cell than some countries combined.
Now we are lagging behind in terms of research, we are lagging behind in terms of really taking to heart the matter of sickle cell in our daily living. The society stigmatises people with sickle cell, they run away from them and sometimes they are even rejected at work. You do not want to employ them because of the possibility of frequent illness.
Now, if we cannot do all that Nigeria can be in the forefront of sickle cell enlightenment, which is what I personally want to do which I have been doing in the past five years since setting up the Sickle Cell News and World Report. Hope Alive Sickle Cell Association is a non-governmental organisation championing the course of Nigerians living with sickle cell.
What is your dream and vision as regards to sickle cell management, treatment and possibility of cure? And reason for establishing this?
Let me start with the cure angle. There is no known cure for sickle cell since it was described over 100 years ago. Up till now despite all the research and medical advancement, there is no known cure except for one, which is called the bone marrow transplant, which is extremely expensive. It is not something an ordinary person can face, only governments can say okay, let us sponsor a child or two for experimental purposes.
I know of many people, who are producing sickle cell medications in West Africa, who say so and so medication can change your genotype from SS to AA or from AS to AA or whatever. It is all lies. I also known of churches, high-profile churches, they claim to be able to cure sickle cell or even cured some sufferers. We did a story on that, we investigated and discovered that all such claims were completely false. We took some of the claimants to the laboratory and found that their genotypes remained the same. Sickle cell genotype does not change. So the aim for setting up the magazine is to put Nigeria in the forefront of sickle cell public enlightenment, if we cannot be at the vanguard of research, we can at least do something.
What prompted you? Are you affected?
What really prompted me is personal experience because I am living with the condition myself. I was diagnosed at the age of about 30 months with the condition. I have since then gone through primary, secondary and university education, but it was not easy at all.
On occasions, there would be exams and I would fall ill. I remember during the West Africa School Certificate Exams (WEASCE) in 1978, it was during the Economics paper that I had a serious crisis and was not able to write the paper. I failed it and I had to retake the paper largely because of that moment of crisis.
The inspiration to start this project came from personal experience because when you experience sickle cell you do not want to see it in others. You know it is a painful condition, which people get into largely out of ignorance. Our parents in those days, when they got married, they knew nothing about sickle cell but these days, information technology is just a click away on the mouse on sickle cell.
Why don’t people become more aware? I know friends, journalist friends, who have children with sickle cell. I even know doctors, who have children with sickle cell. At least people should make an informed choice and know what they are getting into before they start bearing children or getting into marriage.
Are you married?
Yes I married.
Do you have children?
Yes I have children.
Are they sickle cell patients?
I was moving with a girl about 24 years ago, 1988, and the relationship was getting serious. At a point I decided I will like this girl to be my wife but I did not tell her about sickle cell. I took her to the laboratory and when the result came out, I saw AS on the result slip. A sort of cloud just passed over my face and she asked, “what is the matter?” “What is wrong?” I answered, “nothing. Lets go home.”
When we got home I told her my genotype is SS, you are AS there is no way I will continue with a relationship like this. If I did not have sickle cell I think I would have risked it. If I were probably only a carrier like her, I would have continued the relationship. It is easy if you are a carrier only to discountenance or to take it lightly with sickle cell but if you live with it, you don’t joke with it. You know it is not a joke.
Eventually, I did not marry that girl just because of her sickle cell carrier status. She cried and said, ‘even if it is just one child we are going to have, why don’t we have that child.’ I said, ‘look, your reasoning is one-sided. What if that only child will come down with the condition just like me? How can I fall into crisis and the child might ask me, ‘dad you know about this before getting me into it?’
At a point, I told the girl that we cannot go on but she insisted on carrying on with the relationship. I stood my ground. Eventually, we did not marry because of that. I eventually married a woman with AA status.
So you have children now?
Yes.
How many children?
Three boys.
How have you survived these 48 years because you look very healthy? If there are any particular herb, food or lifestyle you adopt?
That is a very difficult question. If I should tell you this is what I take, this is the herb I take, this is my lifestyle I would be a liar. I think everything in life is according to the grace of God. I am not what you call a Christian. I am not a religious person but I know that there are forces behind all the things you see. I know that it is just simply the grace of God. But let me not say just that alone, the grace of God first and foremost then other auxiliary things come in next.
I take my medication regularly. I take my anti-malarials. I am sorry to say that I don’t believe in oyinbo (western) anti-malarials. I take our own African herbals - agbo, Yoruba agbo, and I take lots of water. Water is good for everyone but particularly for people with sickle cell. It helps to improve our blood. The blood tends to clog together but when you are not dehydrated it flows freely within the body. I think that is the principal thing. I take lots of water. Water is my main medication.
The Guardian news
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