I couldn’t go to school of my choice due to sickle cell disorder —Grey Emuze
Greg Emuze is an engaging personality and holds some very strong views when it comes to Sickle Cell Disorder (SCD). Looking at Greg, one is unlikely to think that he has SCD. He knows what he is talking about and also sounded very convincing. He shared his experience living with Sickle Cell Bulletin (SCB) crew. Excerpts:
CAN you tell us something about your family and early life?
I was born 10th of May, 1981 to Mr. Sunday Emuze and Mrs. Dorah Emuze. My father was an Engineer with “Daily Times of Nigeria,” he was chief engineer and eventually general manager of Times Press before he retired. My mother was an Executive Assistant at “UAC.” She also served as Secretary to Chief Ernest Shonekan during his time as the interim president of Nigeria. My parents were very busy people in those days. I am the second of two surviving children.
What happened to the others?
From what I heard, there were six of us. Four passed on at very young ages. Their deaths were probably attributed to some other reasons until my Hb genotype status became known.
Let’s talk about your education?
I had both my primary and secondary education in Lagos. I would have preferred to go to either the Airforce/Command Secondary Schools but this was 1992/3 when Nigeria was on the brink of war. My mum decided that my school must be close to the house and her shop so I would always be within her reach in the event of an emergency situation, not to mention how uncomfortably close these schools were to military bases and airports. The disadvantage was that it created in me that sense and feeling that I was different from other children but in a negative way, especially when I was not allowed to do things other children did. The Lagos African Church Grammar School, a Missionary School in Ifako fitted the bill. The interesting thing was that it was a missionary school before I entered. After I had entered, it was taken over by the Lagos State Government during the era of take-over of missionary schools by the government. Then the school was returned to the missionaries, as a result of their concerted campaign after I had left. So I had the worst time there.
What did you do after Secondary School?
I planned to travel to study Genetics in the UK.
Why Genetics and why in the UK?
My father used to bring home copies of “Newsweek” in those days and I would read them. It was there I found out that man had “unlocked” the human genome and about the field of Genetics. I thought it was a great area of study as distinct from the run of the mill medical courses. I felt it was unique. It was not being offered in any of our universities then, so the solution was the UK.
And did you go?
No, unfortunately, perhaps. My parents could not afford the venture. My second option was to train as a pilot at the National College of Aviation Technology, Zaria. Unfortunately, that was during the period the school was closed down for 10 years. So I had to go for option three, which was to sit for JAMB. I remember studying the JAMB booklet cover to cover and could not find a course I was interested in. Eventually I opted for Computer Science at Obafemi Awolowo University (OAU), Ile-Ife, Osun State. I missed the cut-off mark by 1, but got admitted on the basis of catchment area.
So you got admitted that year?
Yes but I could not resume. I had my admission deferred for one year.
You see, the day I sat for JAMB was the day my troubles with leg ulcer started. I experienced severe pain in my leg and the area changed colour. I was eventually referred to the National Orthopaedic Hospital, Igbobi, for treatment.
Did you go back for your admission after the one year?
Unfortunately, no. That was the period when OAU was closed down for 11 months owing to strike actions. I therefore lost another year. By the time I got admitted, two batches, mine and the then current JAMB candidates, were considered on a ratio of 60 to 40. I then discovered that Computer Science had three options – Computer Science, Computer Science Engineering and Computer Science with Economics. I initially opted for Computer Engineering but found it to be too stressful so I switched to Computer Science with Economics from which I eventually graduated.
When did you graduate?
In 2009. It took so long because I missed many exams because of my health issues. Apart from that, in those days, strikes were the order of the day. I discovered that hostel life was not in my favour. I eventually moved out of the hostel to stay with one of my friends outside the campus. My friend’s mother was a retired nurse. So I was in a home where the conditions were clean and the food was good. That was when my health issues took a turn for the better. I remember when I came home and told my dad that I had finished, he could not believe it!
Did you then go for a Master’s degree?
No. I had lost interest in education. What I wanted was to go out and do something.
Please tell us about your work life?
First, I waited and hoped that I would be exempted from NYSC. I had no intention of going to spend one whole year – doing what? I did get the exemption. I was also not keen on going around applying for a job. Eventually, I joined up with a friend who founded TimbaObjects Technologies, a software company. My job has taken me to at least 26 states in the country and 3 other nations and counting. I have also started a couple of business ventures on the side, but after a while I realised some were telling on my health, so I re-strategised and focused only on things I could do from my desk or computer anywhere in the world.
And what is your job there?
I am in charge of Product Management. Basically, I focus on conceptualising solutions for the problems our clients need to solve. This understanding helps us better design features or products that meet their needs. Guiding the design and development team, I keep the needs of the clients in mind making sure we are actually hitting the mark. After products are deployed, I still need to take feedback and make decisions on what new features or tweaks we may need for the next iteration of the product.
Let us touch briefly on challenges, starting with your time in the primary school?
I rarely fell ill in primary and secondary schools. This can be attributed to the level of care I received especially from my mum. I remember that it was always important, during my primary school days to have drinking water with me. My mum knew all my teachers.
In secondary school I always had my cardigan with me although I used to hide it. But I was really active in those days – I was a goalkeeper – but I had started late (I didn’t play football till JSS 3) because back in primary school they never let me. So I never really got far with this and felt very unhappy. Then I took up table tennis. The type of table tennis we played was not the regular type, it was more exerting. As soon as my mum saw me playing one day, she dissuaded me. You know, I could easily have been in the Nigerian Olympic teams and maybe won some medals!
My greatest regret was that there were things I could have done, which I was not allowed to do. Believe me, in my situation, you do not want people asking “stupid” questions, being “sympathetic” and condescending. The stigma was a constant source of dismay. Sometimes you just want to stay put, do nothing and simply wait for death to come!
For those living with SCD, the greatest challenge is the things you have to forgo and the things you could do but are dissuaded from doing because of the condition. SCD really affects the choices you can make and the choices available to you in all ramifications.
Are you subtly referring to stigmatisation of affected persons?
Stigmatisation is still very rife, that is why full disclosure of one’s status can be risky. This is something I struggled with too. But along the way you meet people who are nice, compassionate and ready to lend a helping hand.
Earlier you told us about your leg ulcer. How did it all start?
I first noticed it about a week or two before I sat for JAMB. I noticed that my leg had some blisters, then the area started to get dark. The pigmentation was changing and then it swelled and finally opened up as a sore a few days after the exam. I got all kinds of advice and eventually ended up at the National Orthopaedic Hospital, Igbobi, Lagos State where they did skin grafting which, of course, failed after six months. I had been warned that the skin grafting might fail. It was a 50-50 chance but, for me, if there was a possibility that a procedure would make my life better, I would always jump at it.
After the grafting, I had to go to the Health Center regularly to have my leg dressed. That was when we discovered that I was having leg ulcer as a complication of Sickle Cell Disorder. For me, leg ulceration was my greatest challenge with SCD. However, my roommates and colleagues knew about my condition and were supportive. It was tasking and embarrassing, having to do my dressing and at the same time, avoid being seen.
Can you tell us, at this juncture, when you realised you had Sickle Cell Disorder?
On my first birthday, I fell ill and was eventually taken to the hospital to get treated; for some reason, the doctor asked for my Hb genotype test to be done and that was how my parents found out. He was also kind enough to refer me to a very capable pediatrician who was very instrumental in helping me stay healthy in my early years, when I rarely fell ill.
How did your friends and colleagues react to your situation?
Sickle Cell pain stops one from doing so many things and the pain is terrible. I have been particularly blessed with friends and colleagues who have been understanding and supportive. The key thing for me was to know when I was going into a crisis. I always travelled with a box full of medications. Just after the 2010 World Cup, I had to travel to Cape Town for a work conference. It was my longest flight at the time and it put me into the bitterest cold I had ever felt. Altitude, long flights and cold are all SCD crisis triggers. A few days after I arrived, there I fell ill and had to be admitted. The white doctor who saw me had never heard or encountered SCD and had no idea what to do. I tried to tell her, but she wasn’t about to take advice from a patient; so I had to call a friend in Lagos – a medical practitioner – who spoke to her and gave her some guidance. If I hadn’t been proactive with my care, it could have ended badly for us both. I have suffered crises in faraway places and each time I have had had to act fast and get help. I never hesitated to inform people about my condition and sometimes have had to be taken to the hospital. I once had to use a wheelchair at the airport in Kaduna in order to board my return flight to Lagos. In the past, I had fallen sick in Sokoto, Uyo, Katsina and at the airport in Accra.
How and when did you come in contact with Sickle Cell Foundation Nigeria?
That was between September and November 2015. First, Timileyin Edwin referred me to Asaju Clinic and they referred me to the foundation. I remember the first time I had my leg dressed at the Sickle Cell Center. You know I used to dress it myself and I would take my time to minimise the pain. No such luck at the center. It was very painful and I swore to myself not to come back even though I was supposed to come on alternate days. But then I noticed very favourable changes and in spite of myself and resolution, I had to go back there for dressing.
What is the state of the Leg Ulcer now?
It is fully healed although I still wear compression stockings and I take my drugs regularly.
We know you are associated with an organisation called CrimsonBow. Please tell us about this and what is your role there?
I am the co-founder of CrimsonBow Sickle Cell Initiative alongside Timi Edwin. It started from discussing our experiences living with SCD and it has grown into a full blown NGO that is positively impacting the lives of affected persons.
Having been through so much what advice can you give to those with or living with SCD?
For those that have Sickle Cell Disorder, I say to them, “Your success is irrespective of your genotype. So get rid of those thoughts that put you down or discourage you or make you feel inferior. You need to take care of yourself. Know your body and recognise the signs and always be prepared to deal with them. Most times people around you do not know what to do in a crisis situation and it can be very frustrating when they exhibit signs of pity. You do not need pity. For those who have people living with SCD in your lives, you need to be supportive and encouraging. Do not exclude them when there is activity. Don’t push too much but, at the same time, do not hold back. You will get all kinds of advice. Be careful and watch what you tell them. They are not less important. If you are a parent and have more than one child, and perhaps only one of them is SS, you must love that one as much as you love the others. Ignorance is responsible for some of the negative attitudes. If someone matters to you then the things that matter to that person should also matter to you.
I remember while on the sick bed in a hospital, a nurse told me that I should not bother going back to school! She “advised” that my parents should just open a shop and marry a wife for me. This is why we need to change how SCD is perceived in all strata of the society. People need to have a fair idea of what affected persons are going through before making hurtful and demoralising comments like that nurse.