Toyin Adesola, an author, a deaconess of the Redeemed Christian Church of God and daughter of ex-University of Lagos (Akoka) Vice-Chancellor, late Prof. Akin Adesola, tells ’TANA AIYEJINA about her experiences as a person living with the sickle cell anaemia disorder.
Despite being plagued with the sickle cell anaemia disorder from birth, Toyin Adesola has shown courage and character to weather the storms of life. Physically, she may be fragile, but her mental strength is comparable to none.
Behind her small frame is a big heart that has fought several survival battles and today, she is a model for people living with sickle cell anaemia.
Although her experience may be harrowing and touching, the 45-year-old Adesola seems to have taken consolation in the words of British statesman, Winston Churchill, who once said, “If you’re going through hell, keep going.”
On this bright day at her Lagos residence, Adesola was in a boisterous mood as she narrates her life experience as a person living with the SCA.
“I was born with it and have been living with it for over 40 years,” she says with a charming smile. “During my early years, I experienced attacks in my bones. These attacks are known as crises. It’s very painful. It’s like someone sticking a knife into you and continuously stabbing you. In fact, some say it’s even more painful than labour pains. It’s indescribable.
“It’s continuous and you have to go on heavy drugs. I had anaemia as well and suffered from low haemoglobin (protein attached to red blood cells that transports oxygen from the lungs to the rest of the body). Sometimes, the haemoglobin drops and triggers the crisis again.
“So you had to go through a lot of blood transfusions. My life was about hospitals and admissions on a regular basis. As I grew older, I was able to cope with it, but I was not allowed to do anything strenuous because my parents were very protective.”
However, one day, a mistake by a doctor almost cost Adesola a leg. Consequently, she was once again thrown into long suffering from the resultant pains.
She narrates her ordeal, “I had more and more crises when I got older and one day, I was rushed to the hospital and it was discovered I had an infection and they gave me blood transfusion. The doctor said I was anaemic and he gave me blood. Unfortunately, there was an issue with the blood and it created a greater infection in me called septicaemia (the presence of bacteria in the blood often associated with severe infections).
“It affected my bones and one day, while lying in bed after long hours, I wanted to turn because of bed sores. When you stay long in bed, you get bed sores, so the nurses are supposed to switch you from time to time but they hadn’t done it for a long time. I decided that I would turn myself.
“Next thing I had was a snap and I was in excruciating pains. The nurses didn’t believe me. It was when my father came that they took me to the theatre and they found out that I had dislocated my hip; it had come out from the socket.
“They had to put my leg in POP from my waist to my ankle. I was there for six months. It was six months of depression, anger and frustration because I couldn’t do anything. I would lie in bed and hear my parents having fun, receiving visitors and eating. Even when they came upstairs to see me, they would stay for a while and go back to face their lives. They couldn’t stay with me permanently.”
But that was not the end of her problems as she was plagued by several other ailments.
“I also had gallstones and I couldn’t take anything with oil. Anytime I did, I had terrible pains and I was placed on a low-fat diet. I managed to overcome that hurdle and I started using crutches. Later, I started having leg ulcers. This can last for between one to 10 years depending on how it’s treated. I had about four of them all over my legs and I was the one who had to dress them. That’s when I got frustrated.
“Dressing the wounds and carrying the legs around with pus wasn’t easy. Basically, I had no life except within my house. School was totally out of it and after Form One, I didn’t go to school again. My parents taught me handcraft so I could occupy myself with it, but it wasn’t the same and I felt frustrated. Thank God the legs finally healed.”
A saying goes that a bend in the road is not the end of the road, unless of course, you fail to make the turn. For Adesola, she was ready to make the turn and her next hurdle after recuperating was to gain admission into the university.
“One day, I just told myself I couldn’t continue staying at home; I had to go to the university. My friends were almost graduating and I hadn’t even written my WASCE or JAMB. So, they got me a tutor and I did a crash course in two years and I gained admission to the Lagos State University to study economics.
“Economics was a four-year course, but I spent five years because I always fell sick, especially during the exam period. There was a time I was writing my exams and the crisis came.
“Initially people around me didn’t understand what was going on, except my friend who said, ‘Let’s rush her to the hospital.’ They took me to the university’s health centre quite alright, but unfortunately, they didn’t have a clue on what to do. I did my National Youth Service Corps virtually at home and I started baking, which I actually turned into business.”
She had survived against all odds but interestingly, her father, the late Prof. Akinpelu Adesola, a former vice-chancellor of the University of Ilorin and University of Lagos, was a highly respected surgeon, while her mother – Oyebola Adesola – is a nurse.
So, it’s quite shocking to learn that both parents – who had the AS genotype – are in the medical field, but didn’t know that it was risky for two people with the AS genotype to marry and bear children.
Adesola explains, “My parents got married in the ’60s and there was hardly anybody that knew much about SCA then. In fact, it was only one doctor that finally diagnosed the problem.
“The awareness wasn’t strong then. Even in the United Kingdom, they didn’t have a clue because it was a predominantly a disorder of the blacks. It was when it was now well known that precautions were given about it.
“I don’t hate my parents because it wasn’t known to them. What would hatred for another person do? Anger and hatred cause even more stress. I’m really proud of my parents because they carried the burden till now, though my father died last year. They handled my case well, unlike some parents who can’t cope with it.”
In a twist of fate, her elder sister, Foluke, has the AA genotype, while Toyin is SS.
“Initially, I felt, ‘Why didn’t she take one A and leave the other A for me?’ But after a while, I realised that though she may look physically stronger than I am, I’m mentally stronger.
“God balances things though we don’t realise it. Maybe because of what I have gone through, I have the capacity to handle issues better.”
Having overcome life’s challenges as a person living with SC, Adesola founded the Sickle Cell Anaemia Advocacy and Management Initiative, a non-governmental organisation aimed at touching lives and provide awareness on the reality of the disorder.
She is also the chief executive officer of Amai Confectioners, author of Still Standing, a book on her life and a deaconess in the Redeemed Christian Church of God. In fact, it was when she became a born-again Christian that she finally won all her battles, according to her.
“My faith in God saw me through,” she says. “The Bible says without God, you can do nothing. My friends’ support was invaluable too, and again, I had a purpose in life.
“SAMI was founded to create awareness and advocacy for the better treatment of people with the disorder because we’re not properly treated. Doctors don’t even know the basic medication to give. I had people who encouraged me, so I want to encourage others living with it.”
As the United Nations World Sickle Cell Day holds on Sunday (tomorrow) to celebrate the event, SAMI will have an event tagged ‘Break the Silence of Sickle Cell’ on Saturday (today). There would be a ‘Red Umbrella Day Awareness Walk’ as part of the activities. “The walk is tagged ‘Red Umbrella Day’ because red signifies blood, while the curve of an umbrella is like a sickle. It’s to further create awareness on how to deal with the disorder.”
According to Adesola, the World Health Organisation, in a report, estimates that 20 in 1,000 people live with SC in Nigeria, adding that based on the census, it accounts for over seven million people afflicted with the disorder in the country.
The figure, she says, makes Nigeria the highest centre in the world and of the 150,000 born annually with the SC disorder, over 100,000 don’t make it to their fifth birthdays.
However, she says most Nigerians are ignorant about the disorder. She says, “There’s a perception that people are aware of the disorder, but it’s not so. I’ve spoken to people who don’t live with it and especially those who live with it. Those who live with it don’t even know the basic things they are supposed to do in terms of medication and checking their haemoglobin.
“Some parents don’t inform teachers about their kids who have SS because of the stigma. Some people live with it and they are not aware. Some people are not even aware of their genotype. So, I don’t think there’s enough awareness.”
Still single at 45, she says her happiness is paramount. “The most important thing is for me to be happy than marry and the person says ‘I can’t cope with this your sickness.’ That will be more depressing to me. I just believe when it’s the right time, it will happen.”
What is Adesola’s advice to people living with SC?
“It’s not the end of the world; be informed. Don’t just rely on what your parents or the doctors say. There’s so much information out there on the Internet and books. I used most of my life to read and that’s why I have a wide knowledge of the disorder.
“Don’t take everything the doctor says. Get a second opinion. Choose a personal doctor that knows about SC and don’t keep changing. The sky is your limit,” she sums up, ever smiling.
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