Mr. Benjamin Onoje is a Nigerian who has been living with haemophilia for 35 years now. He was born a twin and when they were both taken to the hospital for circumcision, was when this chilly discovery was made. With little information of what the condition was, his parents thought they would outgrow it with age but here he is today still living with the condition.
Onoje is happily married with four children, two boys and two girls. His two sons are haemophilia free but it is yet to be confirmed if his daughters are carriers and if they are, the trend would continue in his lineage. This is his worst nightmare.
Tell us about your experiences so far as a haemohiliac. How often do you experience haemophilia attacks?
It has not been easy. At times twice in the month, depending on how I work myself out sometimes. At first I get some signs either from my left knee or my left elbow. Those are my target joints for now and each time I get the signal I feel pains and then I find it difficult to straighten up my leg or my elbow. Just like what is happening now (he tries to flex his right arm). I can’t straighten it now because there’s a bleed there. Between now and the next four days will determine if it’s going to be more than this or not depending on how I manage the condition.
You are the still band instructor in the Nigerian Civil Defense Corp, how do you combine work with your condition?
During attacks, I take permission from the office at first and then I rest well. Within that period of time I don’t do any strenuous thing or exercise. I just sleep, wake up, eat and sleep again.
How frequent is your attacks. How do they manifest?
Just like I said, my own bleed is because of the way I manage myself. I know what I should do and what I shouldn’t do. Mine is episodic and anytime it comes and I cannot control it, that is, when I have tried all I know I could do to help myself and the condition persists, I go for infusion.
How often do you go for medical check-ups?
Well, because of the nature of my job I am always on the line. Going for checkups is not that easy for me. So, because I don’t go for checkups, I try to manage myself. Now if I bleed to my left knee and maybe the bleed starts by Monday, I know Tuesday, Wednesday and Thursday I am not going to work with that leg. I just have to sit in one place and definitely anything I want to do must have to be done by somebody else. The highest I could do at this time is to move from the bedroom to the restroom. This is to avoid putting weight on that particular knee.
How do you take care of yourself after a haemophilia attack?
After you come out of any episode you will need exercise for that particular point of attack. Just like my elbow now (lifts his elbow), once it goes off I will have to exercise it so as to get a full flex. For now I can’t because there’s bleed there. My other arm has gone already, you can see for yourself that the flex is not complete but am not feeling any pain there. The same goes for my right knee, I can’t stretch it that’s why I am limping but am not feeling pains there. If I had that knowledge of doing some exercise after any bleed I believe I would have the full flex of my right knee. As at then I didn’t have the full idea of the whole thing because I don’t go for check-ups, even most of the seminars they do I don’t attend. If I had, I would have been enlightened on how I can do some little exercise to help get my flex back.
Do you have a special diet as a haemophiliac?
Actually, I have not discussed with any dietician of how to watch what I eat, for me I eat anything I come across. I eat beans, rice but I take more of swallow.
Have you ever been or felt stigmatized because of your condition?
Yes, that was when I was in primary school. If you know what it means for your friends to be taking part in the school inter-house sports and you can’t join them fully? During the rehearsals, Marchpast, and you are not taking part in any of those activities. Even at home too, my friends, my playmates they like coming out with nice shorts and then I can’t go out on shorts because of my knees. So, they talk about it and make fun of me. Because of that I like putting on trousers both at home and in school. In school too, when I try to run along with my friends they would start laughing and making jest of me (Laughs) because of the way I limp-run.
Did this affect you negatively then?
Actually it did because most times they talk about me and I feel bad. I just feel as if I am different, like someone who just fell from the sky. But then I had the courage and I was hoping I was going to come out of it anyway. I thought it was something I would outgrow but I am 35 now and still haemophilia A. I just have to live with it.
You have four kids and haemophilia we know could be inherited, are you not afraid for your children?
Yes, the question I would like to ask any expert is about choice babies. When I had my two boys, I was like maybe I should stop having children since they were free. But the fight came up and my wife insisted that she wanted a girl child. I was like if you really want a girl child then start braiding junior’s hair and pretend as though he was a girl (laughs). You can imagine I braided my son’s hair for like three years but at a time the boy got fed up and asked me to cut his hair. I cut the hair immediately. So, we had another child and when my wife called from the hospital to tell me that it was a girl I congratulated her and went to see her. When I got there I was like wow, a carrier! (He sighs). That was what I was trying to avoid when I had my two boys. So, my question would be is there an opportunity for a choice baby, I am a haemophiliac and I wouldn’t want my children to suffer what am going to suffer all through my lifetime, is it possible for one to decide that what he wants are two boys who are haemophilia free and it would happen? I think there should be a way for choice babies.
Are you currently having any problem with treatment considering the fact that the medication for the management of haemophilia is pretty expensive?
Presently, there’s no issue with the way the treatment is being administered because we have factor 8, factor 9 and there’s a foundation who took the bull by the horn to make sure that all children with that factor 8, all haemophilia patient gets treatment and this is just one person who stood up and took the challenge to save the lives of innocent children who are carrying a challenge, a health condition they can’t outgrow. They have to learn how to live with it and eventually die with it.
Now, getting the drugs for me is something the government should come in to see how they can give their support. It hasn’t been easy for Haemophilia Foundation of Nigeria. Megan is there and she has been doing this all along with her own resources with support from here and there. I think the government should give her a helping hand. There are so many children out there who have this health condition but because they don’t have access to the needed medical attention and the parents don’t know how to take care of the children with such conditions most of them are crippled. I am just opportune because my daddy did not give that space. Any time the bleed comes up he is always there to donate a pint or two of blood for myself and my twin brother because as at then getting the factor 8 was very expensive and he was just a staff sergeant in the Nigeria Army. I think it’s high time the government come into this and see how they can help.
Why does your father have to keep on donating blood for your treatment and how effective was this routine?
Then they believe that a person who is not haemophiliac has the whole protein in his blood. So, once they give that fresh whole blood it would also reduce the speed of blood flow and then there would be clotting. My dad started donating blood for myself and my twin brother in 1982 up until age 15.
What message do you have for the NGO that is taking care of your medication right now?
I really want to thank Megan. When I discovered her and what she was doing was when my elder sister lost her son. The boy fell on his back and hit his head on the ground and bled to death. He was also a haemophilia A patient.
She had another boy who was haemophilia free but we had to wait for him to get to like 7 years before we went for circumcision because we were all scared that he is also haemophilia A. When we lost junior I started hearing of Megan, then I didn’t know of HFN but all I was hearing was Megan. It was early this year when I went to Kaduna for a standout conference of adults with haemophilia that I got to meet Megan in person. In the conference I had contact with her, we talked and all through the conference, I was enlightened. HFN I must confess are doing a very good job. Every time you go to this hospital (undisclosed) in Kaduna state you will meet children lying on benches. The whole place is just piled up with new babies waiting for circumcision. And they are all waiting for Factor 8 because you can’t cut them without giving them infusion and then you will always find Megan there. I think it’s not easy for one person to do this. I want to thank HFN for giving hope to people with haemophilia and I pray that God would give them the courage to carry on with what they are doing because they are saving lives.
What is your final word?
I think I have one more question and it should be on cartilage. Isn’t there a way they can do cartilage regeneration? I think there should be. Like the cartilage on my left knee is gone but if I can get a cartilage regeneration process there then I will get my full flex back and I will be okay.
Mrs. Megan Buky Adediran
Megan as she is fondly called is the founder and Executive Director of the Haemophilia Foundation of Nigeria. She is a mother of two children who are suffering from haemophilia.
Megan has spent so much treating children with haemophilia in Nigeria.