• Tony Igele

Sickle Cell Anaemia Cannot Stop Me

From IT in the banking industry, she was drafted in 2014 to work as a business analyst on a project with Oxfam on behalf of the British Ministry of Justice; after which she was drafted last year to work with her Majesty, the Queen to work as head of “Project Wi-Fi Migration”. It has been successfully executed.

When did you discover you had sickle cell anaemia?

My family discovered I had sickle cell when I was two years old. I fell quite ill so they took me to a specialist hospital, that was when they found out I had sickle cell by the doctor in charge who passed away last year. Because my mother could not handle my sickle cell life my family decided I should live with my grandmother in Benin.I was in and out of the hospital and people didn’t think I would make it up till today.

You like to say that “sickle cell anaemia has nothing on” you- what is that about?

When I was growing up I was like the black sheep of the family. I had that I- don’t- care attitude right from when I was young because, the time I can remember was going in and out of specialist hospital. Almost every weekend I saw people die. I saw people come in for the same treatment. They died while I was there. And sometimes when I was on admission it would seem as if the ghosts would come at night. There was that trauma of having to be with that corpse till dawn when the mortuary opened at 10 a.m. So I had a mind-set of living my life for today. If it is partying, I am good. If it is having fun, I am there. Sickle cell anaemia cannot stop me because I would break down again with crisis. I might get to specialist hospital and might be among those people that would die that night.

Princess Rachael Iyetude and sons

In Nigeria, the stigma of sickle cell was like if you have got sickle cell, they have already put a death sentence on you. They always have that look of pity and I tell them not to pity me. It does not limit me. In University of Benin, I could be having crisis and would not do some of my exams, sometimes I would break down from UBTH and my friends would carry me to the hall to write my exams and as soon as I am well I am out again.

It didn’t adversely affect your education?

It did affect my education. There are two things that could cause sickle cell crisis: emotional stress, which could be triggered by the heat, dehydration, family stress, boy friend stress, children stress, and physical stress for example, overdoing exercise, or you are doing a job that you are not meant to do. But for me, the physical stress was not exactly what was bringing me down, it was more of the emotional stress. In pain you have to attend lectures. If you do not attend lectures you now have to rely on hand-outs. In the UK, I went back to do business management in 2008 but I did not finish it completely because I was having crisis during exams and in the UK, the exam method is mostly done by assessment.

What did that mean to you?

Nobody will really sit down and give you questions. It is two different ball games but it is the best education I have ever had. For example I read computing in Uniben and I did not see a keyboard one day but I am a graduate of computer from the University of Benin. It was when I went to England and told them I had done programming language, they asked me to write a programme and I went blank and that was when I knew my university years in Benin were just a waste of time. I had to start all over again to learn everything about computing and got my certifications. I was very lucky because when I went to the UK Microsoft certified just started. So I did all the exams. One thing about sicklers is that we are very intelligent. We can read in 24 hours and pass exams. I was one of the highest paid analysts in the UK.

You were telling us about when you were two years old…

If your mum is AS and your dad AS, you get the S syndrome so I was the lucky one that took the S from both parents. My Mum said I was two years old when they rushed me to the hospital and found out I had sickle cell and they did not have a clue of what that was because the awareness wasn’t there.

Luckily they had a specialist, a doctor consultant who knew about it. They didn’t have blood banks. So luckily for me, my dad came down to Benin from the site where he worked and found out I was short of blood and there was no one who matched my blood, so they checked my dad’s blood and it matched with mine.He saved my life when I was two years old.

I faced this stigmatisation of being an ‘Ogbanje’ because I was very light skinned. It is now I do not blame them because it boils down to awareness. Then I took a lot of offence but when I was growing up I had to understand.

In Africa when you are not well and are constantly in and out of the hospital, they can tag you anything. We were sickle cell born through no fault of ours but we can still live a normal life, we are not different from the AA or the AS. And there is no cure so nobody should allow himself or herself to be deceived.

There is a new thing I was reading about…

That is ‘stem cell’. I knew about it in 2012 when I came to Lagos. I went to have a meeting with Doctor Akinyanju with Nigeria football legend Segun Odegbami, to find out if I qualified for the stem cell and from what he said it is from the age of 16-35 and I had passed that age.

So there is a 50-50 chance from 0-35, but that doesn’t mean it will be successful. I found a way of managing myself, so I take plenty of fluid, rest and live stress free. Anybody who stresses me I cut off. If you have financial stress, try to resolve it but for every issue you must have a plan B.

Was becoming a mother frightening for you?

I got married in 1999. My UK consultant didn’t believe I should have children. He felt sickle cell was enough stress. I was actually on contraceptives to prevent me from getting pregnant and I went to Italy to celebrate my anniversary with my husband believing that I was still safe. I came back a week later and found out I was pregnant. It was a shock.

I booked an appointment with my consultant and told him I was pregnant. He told me I was going to get rid of it and booked me for a D&C. I had a crisis that very week before I was to go into theatre. So he sent me to do a scan and that was how they found out I was expecting twins. I started crying because I felt I could not cope with one, talk less of two.

My doctor then got together his team and said he had never given birth to twins on a sickle cell patient before so he needed to make it work. He assured me of giving me whatever support I needed. From that day till I was seven months pregnant, I never had crisis once. I went in every two weeks for blood test. All through those seven months I did not take panadol one day. I only had crisis when I went into labour.

You don’t regret it obviously

The best things that happened to me are my identical twin boys. I remember my mum having a funeral party for me when I was 18 because the doctors told my mum I would not make it past that year. But I am still here, in my forties and still strong. I have a successful career; my children have grown.

When your husband was advised that you should not have children, how did he take it as an African man?

We started dating when we were both in Uniben. He was always the one sitting by my side in UBTH when I was in and out of crisis. Coming from a senior consultant, we believed what he said that it would be too much stress for me to have a child.

A lot of people believe that it has something to do with the environment…

It is not the environment per se but the negativity that comes from Nigeria can kill you emotionally. They believe you are disabled already. You have got a deadly disease and nobody marries a sickler. I try now not to blame anybody because it is ignorance that makes Nigerians have that attitude towards sicklers. All sicklers are as strong as the AA person.

What’s your philosophy of life in general

In Nigeria, I was babied. They did not allow me do things on my own even till the point I entered the university. My grandma especially, just believed if I picked up that bucket of water, the crisis would come and I believed it. And as soon as I actually carried that bucket I had the crisis. When I got to the UK, I had my first crisis and was taken to the hospital. They were just trying to understand what sickle cell was all about. We got talking and I told my doctor about my history. He then asked if I had hobbies or had started a job. I told him I hadn’t started working because I believed I could not do anything. He asked what I would like to do and encouraged me to go back to school. So I did my training in the mornings and worked in the evenings. They injected skills into us and sent us out to get jobs like normal people. As soon as I finished that, I ran into the IT market and have never looked back since.

You talked about the society, but a lot of families in Nigeria still do not know how to handle sickle cell anaemia?

There is a group on Facebook that I joined. I put my life out there. I told them I am a sickler and a mother of two. I do not allow anything stop me. I advised them not to allow anybody tell them they cannot amount to anything. What I have noticed especially from my own experience is that our parents carry sicklers like eggs. They think we are fragile but we are not. To them if we do anything outside our comfort zone we are going to breakdown and die. No one wants a child to die.

I told all the parents who in boxed me that all they need to show their children is love. Do not let them know they are different from all your other children. When I was here I accepted my life that I was a sickler but when I travelled abroad the doctor told me it is just a sickness. Everything in life is about the mind. If you accept you have got a disability then you do. It’s either you accept it and run with your life or don’t accept it and keep hating your parents for the rest of your life. We are passing a message that regardless sickle cell, we can go to school and graduate, have a career. I have people in-boxing me who did not use to reveal to their colleagues that they are sicklers but are doing so now. I wear my sickle cell at work. If I have a crisis I am in the hospital and the next day I am back at work. They hug me and do not treat me differently. We do not need the pity party.

I do my charity effortlessly. If not for Homerton hospital I won’t have had my children. And I won’t have been where I am today. I ask myself if I can climb that mountain, I access the area and when I get to that mountain I take a picture and post it. I then give myself other goals. Nothing stops me.

I recently visited the one in Benin. Bought drugs for those I could and did other things I could afford.

How do we fight stigmatization of sickle cell anaemia?

I am a mother of twins, have a career and I am working in the UK. I have worked for the past twenty years of it. I have had crisis in between. When it comes I sit back and rest. When I am well I go back to work. Don’t remind us of what we are. It happens, so help us become people that matter in the society by loving us. The negativity and stigma need to stop. Sickle cell is there and it pains me that the government is not doing anything about helping sicklers in Nigeria. I was at the sickle cell centre in Benin in 2010 and they were in a bad state.

I tell my friends not to give any money to the Doctors but to go there, check what they can provide, donate it and take a walk. Sickle cell Society has been doing a lot especially in Lagos but a state like Edo state people still die on a daily basis. The stigma is still there and awareness is not there. People do not know they now have to do a test before they marry that partner. Unfortunately the people who still die of this are the poor people because they do not know what “AS” genotype is until they have that child. I believe God sustained me till now for a purpose. I can go to the end of the world to help sicklers. If I can only save one life then I am okay with it.

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