A Warrior in Crisis: The Bittersweet Tale Of A Sickle Cell Survivor

In Nigeria, more than four million people battle Sickle Cell Anaemia (SCA). Out of the 150,000 births recorded in Nigeria annually, it is estimated that only 25 per cent may be alive to witness their 25th birthday according to the Sickle Cell Advocacy and Management initiative. 

Sickle cell disease is an inherited haemoglobin disorder comprising of sickle cell anaemia (Hb SS) and some less prevalent but related conditions such as sickle haemoglobin C disorder (Hb SC) and sickle beta Thalassaemia (Hb SBthal).

While there is a 25 per cent survival rate for sickle cell patients, out of the estimated 150,000 births recorded annually, identifying sickle cell carriers is not difficult as most of these patients inherit and develop specific traits ranging from excessive fatigue or irritability, anaemia fussiness, bedwetting in babies, associated kidney problems, jaundice and others.

Patients with SCA who suffer from severe pain in the bone amongst others have a mutation in a gene. As a result, haemoglobin molecules don’t form properly, this causes the red blood cells to be rigid and have a concave shape (sickle shape), hence the name ‘sickle cell disease.’

Every year, an estimated 300,000 – 400,000 babies with SCA are born while about three-quarters of them across a geographical band in Africa stretching from Senegal to Madagascar, mirroring the continent’s malaria endemicity. In much of this region, over 1% of all newborns have SCA. Nigeria alone is home to 25-35% of global SCD births.

Dotun Oladipupo is one of the survivors of sickle cell anaemia in Nigeria. He is a lecturer and father of one who has been lucky to survive several chronic sickle cell anaemia crises. Like many other carriers of sickle cell, it is a bittersweet tale for Dotun, who is a lecturer in Moshood Abiola Polytechnic Abeokuta.

Growing up, Dotun was faced with a myriad of challenges peculiar to all carriers of the sickle cell gene, ranging from stigmatization, abuse and frequent visits to the hospital for treatment. Some of these challenges, Dotun recounted, sometimes made him feel uncomfortable when he was much younger but, growing older, he has come to accept himself.

“I completely embrace who I am, embrace my pains, my differences. I basically embraced whatever life has placed itself on me. The limitations and everything attached to it I embraced them. If you like taunt me from now till tomorrow I have accepted myself there is nothing you can do to me.”

I was bedridden and lived on pain killers for two years,” – Dotun 

Mr Oladipupo, who also runs the Oladipupo Foundation For Sickle Cell, an NGO involved in raising awareness, hope and empowerment services for people living with sickle cell said the crisis he encountered led him to write a book which, according to him, is a memoir.

He disclosed further saying “As someone who runs an NGO, I couldn’t believe I’ll be beaten down by a cause I have been agitating for.

“I was diagnosed with Avascular Necrosis (AVN) of both hips. It got me bedridden for about two years, it took the life out of me. It brought so much hopelessness, despair, fear and in fact, I can say I died many times during those periods. 

“I attempted suicide a couple of times. But in the midst of that, I had my parents who stood by me. My wife was strong, too, at a time and I have a son who I saw in him a reason to want to fight and of course, we cannot take away God’s faithfulness in our lives, there’s this influence of God in the life of every man.

“I was bedridden for about two years in one place, in pain all through, living on painkillers [and] crying virtually every day. [I] left work [and could not] do anything [during that time]. I slept in one place, I used the toilet in one place, ate just in one place, I could not shift or move to the other side of the bed. I would have to get about two to three people who would move me to the edge of the bed.

“This was a period for my family that I never wish anyone would go through. My family stood together, stood apart, torn apart and eventually put together again but it was a very tough period.”

A Warrior In Crises, A Memoir

Recently, Mr Oladipupo launched his book, A Warrior In Crises, at the Park Inn Abeokuta with many dignitaries present at the public presentation of the book.

Speaking further on what led to the birth of the book, he said: “One of the things that inspired the book is one just like I said I run an NGO [called the] Oladipupo Foundation For Sickle Cell and it’s over ten years and [I] have had contact with people living with sickle cell close to about 100 contacts. Have had physical contact with people that live with sickle cell, parents kids, maybe in 100.

“After I had the grace to live for another year, I chose to put practically all of my experiences and everything I have experienced during that period together in writing. Because I know whether you’re a sickle cell or something, everyone has been through those issues as well.

“The book itself is a memoir. The book x-rayed sickle cell and spirituality, how politics and governance affect people living with sickle cell. Sickle cell and marriages, sickle cell and social lives, everything as it affects me that time and of course social media and sickle cell especially as I experienced it first hand. 

“Once you pick the book you’ll probably see all aspects of life from my own angle. Because it is a memoir it is not a fictional work so that was what influence and inspired the book.”

A Message Of Hope

“I intend to spread a message of hope, not only to those people living with sickle cell but to everyone who has one life challenge or the other. You can pull through no matter the crises you’re in.

“The fact that I am alive is not enough. I want to do more. I want to encourage them that being alive is not enough, you have to live your life, live your dream. So it is one of those things that the book set to achieve and also in writing the book it is an opportunity for me to appreciate everyone who has stood by me at the time in any manner, in any way, the only way I can appreciate them is to put it in a documented form.”

Married Life And Sickle Cell

“Well it’s not easy, it’s not going to be easy. How do you tell somebody who is married to a sickle cell [warrior]? What would you tell the person to do or not to do? Though it’s really difficult, of course, we have a full support system who are making the marriage a bit easy to live. But basically, without deceiving myself it’s not easy.

“It’s very difficult, and of course for my son who was about 1 year when I got sick. One can not tell the psychological effect this has on him. We can tell now we don’t know and now he’s growing up with somebody like me. This is who he knows as a father but one can not measure the impact of those things on him. We thank God for life.

“Let me say after our world sickle cell day programme in 2016 the activities of the NGO was at a standstill which is why I believe with the launching of this book the concept of adopting a warrior programme for people of goodwill to pick a warrior and invest to their lives, their education, business, into their parents so that their standard of living will improve and they’ll have time to contend with their medical issues.

“When you live very healthy you have less medical issues to contend with. That’s the plan. So for people living with sickle cell, there is only one thing I’ll like to say to them: don’t let your challenges define you. Don’t just stay alive live it is not.

“For those living with sickle cell, don’t allow your situation to just make you be alive, take cognisance of your medical advice, chase your dreams, pursue your dreams, go for your education, go for certifications, go for trainings and develop your gift.

“I know a lot of people believe that to every sickle cell there is a deposit of gift or creativity in them. Of course, God has used that part to compensate them for the physical or the medical shortcomings that are deposited in people with sickle cell.

“Do not allow your situation to limit you from pursuing your dream, just like I am a lecturer. I love to go to classes it’s a fun job for me, it’s not work.

“I want to enjoin the parents and people in the society that people living with sickle cell already have their own challenges. The best you can do is to support them and show them love.

Government Should Do More

“There should be a legislation to people living with sickle cell anaemia apart from free access to healthcare and there’s a need to improve the general health care of the country so it is when the general health care of the country is greatly improved that we can now begin to talk of specialities like people living with sickle cell people living with cancer and other issues.

“But if that has not been done there should be legislation for people in employment processes.

“A special quota should be made for people living with sickle cell. Once they are qualified they shouldn’t be made to go through some unnecessary bureaucracy or processes of employment.”