I wish I was never born with hemophilia but no regret…
My name is Sanusi Akeem Omobolaji I was born in the early ‘90. Like every new child born, joy was in the heart of the parents and smile on everybody’s faces. Being a boy, it was a very big joy in the Yoruba family who cherished male children so much.
You wouldn’t have known whether a child has haemophilia from birth, until such child starts out with basic child actions like crawling, sitting, walking and growing teeth. In most cases, the symptoms usually show up early at circumcision, but I never showed any unusual signs of bleeding during the circumcision process. Eventually, when the symptoms started to show up, it puts parents in the race of getting a solution.
Haemophilia is a hereditary bleeding disorder. This is as a result of a mutated gene inherited from the mother, which makes the blood not clot easily.
The race of moving from one solution centre to the other made uneducated Yoruba parents like mine seek help from the tradomedical centres. Some couldn’t recollect how much concoction they had to take including incision marks, believing that would solve the problem. But for me, the stress was not too much because I have an elder brother with the same condition.
My parents moved from one hospital to the other, from one specialist to another seeking an explanation to the predicament of their sons. In my days, there was not much knowledge around regarding haemophilia, so this inculcated fear in the heart of many parents. My mother once told me that she wanted to throw us away (my brother and I).
Haemophilia pain is unexplainable with restlessness, and no parents would love to see their children in such pains. When parents get a doctor to tell them about haemophilia, they feel relieved until they hear that it is not curable. The father or the extended family pick up a fight with the mother because they were told that the boy inherited the condition from the mother. This has broken many homes and marriages, fathers leaving the mother to shoulder the responsibilities.
My parents did all their best especially my mother – moving from one hospital to another – until she finally got to Lagos University Teaching Hospital (LUTH). This is where she was educated on how to take care of my elder brother and I. Also, she did all she could best to take us to clinic for some years before she couldn’t get to continue due to financial issues.
In those days, blood transfusion was the order of the day. At some point, she could no longer afford that, then she resolved into getting nurses on the street to care for us. This became the norms until she “met Jesus Christ” and started going to church. This made the hope of a brighter future for her sons stronger and deeper. Subsequently, we were raised on the diet of faith and endurance – no drug, no treatment. Really, God was the only source of relief in the times of pains. My main source of hope and energy were founded on my meeting Jesus amidst all. Although there was no money to get orthodox treatment, Jesus has been my pain remover over the years until now and still counting. Also, my church played a major role in this journey, and my pastors, at every juncture of my life.
I came in contact with the Haemophilia Foundation of Nigeria (HFN) in 2016 through my elder brother – who now lives in Abuja – after 23 years with haemophilia without adequate treatment. By this time, I already had damaged joints both in the right and left elbow accompanied with a thin hand. I took my first factor dose in 2016 at a camp infusion held in Ikorodu and that was my first comprehensive enlightenment on my condition as a person with haemophilia. Also, having to meet others with similar condition helped me stand because I used to believe that My brother and I were the only persons with haemophilia.
One of the stories my mum told us about my early occurrence happened when I was a year old, and I was rushed down to the hospital (LUTH). By the time she got to the children emergency at around quarter to 12 in the midnight, I was already lifeless in her hands. She was there with Mr. Apanpa, a neighbour who worked in the hospital in those days, sitting down restlessly waiting for a doctor to come in. At exactly 12:00am, a female doctor walked into LUTH emergency ward to wish them Happy New Year, and then asked if they needed any help. Immediately, my mum rushed down to her and placed me in her hand. She tried all to resuscitate me, and finally I came back to life after many attempts. I was transfused and it went weird, but God took the glory at the end.
I grew up in a one room apartment with my parents and other siblings on the street of Oshogbo, house number 29, Itire Lagos. In my primary school days, I was always absent from school because of one crisis or the other. I couldn’t get to tell my teachers about my health because I knew nothing about it, so this made my teachers attribute it to sickle cell. Most times, I was always only going to write exams just for promotion’s sake. However, in most of examination written I had always come out excellent despite my absence from school. Haemophilia does not affect our intellect; most of the people with haemophilia are the best brains in their different endeavours. I attended up 4 primary schools, moving from one school to another due to health and financial challenges
On one of those days, I had a terrible occurrence. Of course, all my haemophilia crisis experiences are terrible but this particular one was different. I bled into my right knee, so I was at home in pains and crying. A neighbour named Aunty Ngozi pitied me and gave me sleeping tablets to ease my pains and help me rest. She gave me half of it then warned me not to take the other, but I wouldn’t listen because I got relieved a bit after the first half. So, I took the other and started hallucinating like someone who was drunk.
At this early stage of my life, I experienced stigmatization because other children refused to play with me, talk to me, or touch me. Parents would call their children in and threaten to beat them if they were caught around me. Well, greater thanks to some friends who disobeyed their parents to play with me. The likes of Waliu Apanpa, Gbolagade Peter, Olalekan Qudus, Lammy and many others. They made my childhood experience memorable against all odds. They would come around me, carry me to see movies. Even the girls among us then were wonderful, the likes of Bisi, Sadiat and Abibat of blessed memory.
My secondary school days were very challenging moments of my life, especially with records of bleeding episodes. Those days were actually the period I stressed my joints so much engaging in many activities; trekking to and fro school, hawking for my mother and attending tutorial classes to learn.
During my junior secondary school days was when I experienced a lot of bleeding episodes, which would usually take me out of school often. As often as every term for weeks, sometimes lasting months. One episode I can never forget in my life was the day I fell on my knees in class. I attended a public school in Mushin, Lagos Southwest Nigeria, Idi Araba High School to be precise. It happened that my chair was stolen in the second term of my first year in school, and ever since then I had been sitting on the floor in class except days when someone who owns a locker was absent. Otherwise, we sometimes improvise by placing a wooden plank in between two chairs. This was exactly what I did that day and unfortunately the plank slid, and I fell on the ground, with my entire weight impact on my knees.
Before the end of the day, my knees were swollen that I couldn’t walk. I managed to move from the class to the school football field where I found a pavement to sit on. The challenge was how I would get home, without transport fare or friends to carry me. As I waited for my friends to finish playing football, the pains aggravated so much that I started crying. My friends saw me with tears on my face, and they rushed down to console me asking what had happened. While explaining to them, the Further Mathematics teacher from Senior Secondary School, Mr. Hamzat came by and asked what was wrong. I explained my predicament to him, he then gave one of my friends (Saheed Awelenje) money to take me home. Saheed Awelenje and Abiodun William took me home that day, on Abiodun’s back.
It was such a challenging moment of my life as I had to partake in many activities aside from sports, but I often play football with my friends when I’m relieved of pains. I was very shy to tell people about my health condition including my teachers, so I had no exemption from most punishments and beatings. I was very lazy in writing, so I really do not write notes in class, and this led to many punishments. How would I have escaped the beating of Mr. Falaye, my Physics teacher without a note. I wouldn’t understand why I disliked writing back then, but the only thing I can say was that I usually feel pains on my phalanges and wrists while writing, even till today. The presence of people like Ayomidipupo Babatunde, Owolabi Hammed, Anjoloiaya Temitope, Akintade Comfort and many others made my senior school experience a worthwhile. Having to study together, attend tutorials and help me to stay focus, Irregardless of the pains.
Having haemophilia does not exempt you from every other life experience. You have to read like every other person does, write exams, and make money. There was a time in my life when I had to hawk pure water inside Ladipo market in Lagos, days where I was a cleaner (washing people’s toilets) to raise money. There were days I was learning shoe making and at the same time going to school.
After my secondary school education, I got admission into the Polytechnic (Federal Polytechnic, Offa) in 2011 after two years of waiting. The same was the experience all through. I still wouldn’t tell my lecturer about my health issue. I obtained a diploma in electrical electronics engineering. The likes of Medupin Oluwatisegunfunmi, Odediran Tobiloba, Odetoye Samson and Abbdulmalik Afeez stood the ground with me, making it easier for me on campus back then. I was very active on campus in my polytechnic days that I was the General Secretary of my fellowship then (FSFOFFA) and the Assistant PRO of my department (National Association of Electrical and Electronics Engineering Students’). I used to be a tutor to many of my course mates and juniors in the department.
I was a school teacher for years, Teaching Further Mathematics and Physics in a secondary school in Ilogbo Asowo, Ota, Ogun State, Total Grace Schools. The proprietress of the school gave me many privileges and a good work condition because of my health. I had taught many students out of secondary school with most then been a graduate of different institutions in Nigeria today. The presence of some people like Ayanlowo Oluwasegun, Patunola Tolulope, Ayanlowo Ebenzer and many more made it easier for me to scale through this phase of life, having to back up for me in my absence when I have bleeding occurrence. In those days standing before students as a teacher was very challenging with damage joints. I often felt ashamed and unworthy, especially when the students start laughing without any cause. Some would even mimic the way I walked. I had tears in my eyes when I caught a student in such act. Some would come to ask what happened to my legs, but I was very ashamed to talk about haemophilia in those days. Ofcourse, that would have been an opportunity to educate them.
I had a major occurrence in Late 2013. I bleed into my right elbow for the first time and it lasted for 3weeks, with unexplainable pains and sleepless night that I was praying to God to take my life.
The pain was so terrible that even my pastor back then Pastor E.O Ileasanmi was coming to my house every day to pray and encourage me. I had thought that would be the end of my life but all thanks to God I scaled through. There was no treatment available ofcourse, I knew nothing about HFN nor factor and my parent were afraid of taking me to the hospital due to financial constraint. I was absent from school all that period. My friend Ojelade Amos would come to cheer me up and walked me down to have some fun. The presence of person such Mrs. Comfort Oloruntobi was like soothing balm on my bruised heart. She was there all through the phase of that pain even till now.
I was denied admission back for My HND in 2015, so I had to wait till 2017 when I finally got admitted into Federal University of Technology, Akure (FUTA) having sat for JAMB several times with good scores. I am currently in 300L studying Industrial Design. The experience is still the same, but I now have the boldness and courage to tell people about my health. There are days when I will have to be absent from school because of my health. It can be very frustrating when you have such a health condition that takes you off from school for days, weeks and yet you still have to meet up with every other person on returning. However, my lecturers and Head of Department have been wonderful, giving me the privilege to have enough time to get things done.
Also, having access to factor through the Haemophilia Foundation of Nigeria under the leadership of Mrs. Megan Adediran with the help of the World Federation of Haemophilia has helped a lot and remained the only surviving hope for people with bleeding disorders in Nigeria. This tremendous achievement has brought hope to many persons with bleeding disorder.
At different points of my existence, I had considered giving up on life itself. if not for God in my life and the presence of some people who have consistently been a major source of encouragement, I don’t know what the story would be today. My roommate, Oyedotun Oluasegun played a crucial role in my life in this phase, he would stay with me in the hospital while on admissions. After he graduated, my friend – Onifade John – fill in the gap alongside with Akenroye Ayodeji, Ayoola Femi and Oladuja Omolara.
Haemophilia does not stop you from being productive in life. I am a graphics designer with many designs done, having to get work done even while in pains. I have been opportune to be part of many projects. I currently serve as a lead designer for a start-up health-tech project named SKRIND and Prediagn under the leadership of Mr. Adekunle Adeluwoye and also as an Intern designer at Medicaly, a health tech start-up led by Akingbola Adewunmi. I also serve as the creative director for Avalanche Profile and Avalanche Pixels, My own personal start-up brand. Although, juggling all these can be very challenging, especially in the aspect of prompt delivery on the days of crisis – where one is in an imbalanced state. However, we continue to push ahead.
There are many more experiences to share about my haemophilia story, but here is my highlight and an abridged version. I am grateful that having Jesus with me on the journey has made it a worthwhile as well, even though it has been tough and rough. Furthermore, I am forever grateful for everyone who has played a role in my life from childhood till date – my parents, siblings, my pastors especially Dream Centre both Ibadan and Akure, my friends, the Haemophilia Foundation of Nigeria and many more people, the list is inexhaustible.
DON’T DIE!
