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From Juliana Taiwo-Obalonye, Abuja
At 54, Adeshetu Odiba has lived long enough to defy the grim prognosis she received as a child and turn decades of pain into a mission to help others understand and manage sickle cell disease.
There were times when the pain was so severe that she could neither eat nor move. As a young girl, she was told she might not survive beyond her teenage years. Yet, against those odds, she has built a life as a wife, mother and civil servant with the Office of the Head of the Civil Service of the Federation.
Now, she is adding another accomplishment to her story: becoming an author and advocate for people living with sickle cell disease.
Her book, “Understanding Sickle Cell Disease: A Comprehensive Guide for All”, is an attempt to transform her personal struggles into practical knowledge for patients, parents, intending couples and the wider society. Launched under the theme “Awareness Today, Healthier Tomorrow”, the publication reflects her determination to ensure that other families are better informed about the condition.
“I have come a long way all my life with pain, resilience. It has not been easy living with sickle cell from childhood,” Odiba said, recalling the experiences that have shaped her life.
One of the most difficult episodes occurred in 1988, when she was a teenager. For three days, she remained bedridden, unable to eat or move because of the severity of her pain. During that period, members of the Charismatic Renewal Ministry visited her, prayed and encouraged her to embrace Christianity.
“That was 1988 as a teenager. And I have been holding on to God, not that it has been easy,” she recalled.
Her faith became a source of strength through years of uncertainty and painful episodes. But surviving the condition also gave her a deeper understanding of the difficulties faced by people living with sickle cell disease and the families who care for them.
For Odiba, the publication of her book represents an opportunity to give meaning to those experiences and ensure that others benefit from the lessons she has learnt.
“Today is turning my pain to purpose. I know God wants me to go through it so that others will benefit,” she said.
Her advocacy is particularly directed at parents, many of whom struggle to provide the consistent care required by children living with the condition. Some families, she noted, have two, three or even four children with sickle cell disease, making the financial and emotional demands especially challenging.
“How will you cope with four children as a family? Some are having three, some are having two,” she said, drawing attention to the burden such families face.
She urged parents not to abandon hope or allow the challenges of caring for affected children to overwhelm them.
“Don’t give up on your children. You just have to be strong and manage them. You just have to be supportive,” she advised.
For families dealing with recurrent painful crises, the demands extend beyond providing food and shelter. They often require access to specialised healthcare, regular medical attention, appropriate medication and emotional support. Odiba believes that families should not have to face these challenges without adequate institutional assistance.
Although she acknowledged government efforts, she argued that more needed to be done to improve the quality and accessibility of sickle cell services in Nigeria.
“The government is trying, but they are not trying enough,” she said.
Odiba disclosed that she had approached the Ministry of Health and written to the First Lady, Oluremi Tinubu, seeking greater attention to the needs of people living with sickle cell disease.
Among her proposals is free genotype screening in public health facilities to make testing accessible, particularly to people who cannot afford private laboratory services. She also called for better laboratory facilities, stronger blood banks and more haematologists to provide specialised care.
Beyond healthcare infrastructure, she wants sickle cell education incorporated into Nigeria’s school curricula, from basic to tertiary institutions. She is already engaging members of the National Assembly, including the chairman of the Senate Committee on Education, on the proposal.
She believes that early and accurate information can help young people understand the condition and make informed decisions as they approach adulthood.
One of her central messages is the importance of genotype testing before marriage. She cautioned intending couples against allowing romantic attachment to overshadow the need to understand the genetic implications of their union.
“Please, you will not be able to stand it. If you say love, love, love, and you are desperate to go ahead with that marriage, by the time you start producing children, you will discover that the love will fade out,” she warned.
Her appeal is for couples to understand their genotype combinations and the possible risks to their children before making reproductive decisions. She believes that access to accurate information and counselling can help families prepare for the responsibilities associated with the condition.
Odiba is already planning another book, “An Unending Journey with Sickle Cell,” to further document her experiences and continue her advocacy.
Her message to people living with the condition is that a sickle cell diagnosis should not extinguish their hopes or aspirations.
“We are champions. We are overcomers,” she declared.
“It is not a death sentence for you. It is not finished with you. You will not die, you will live to testify the faithfulness of God.”
At the book launch, Dr. Jumai Ahmadu, director, Reform Coordination and Service Improvement Department (RC&SID), of the Federal Capital Territory Administration (FCTA), described the publication as an important resource for education and advocacy, noting that its relevance extended beyond Odiba’s personal story.
“This book is more than just a publication. It is a vital instrument for education, advocacy and the prevention of sickle cell disease,” she said.
Ahmadu described it as “an impartial, accessible guide that can save lives and give hope to many”.
She also acknowledged the contribution of the owner of Human Rights Radio 101.1 FM Abuja, Ahmed Isa, popularly known as Ordinary President, to genotype awareness in the FCT, particularly through his support for free and premarital testing.
According to her, intending couples need to understand their genotype before beginning married life.
“It is very important for every intending couple to know their status before starting life together,” she said. “As I always say, love should look beyond emotion.”
To illustrate the consequences of ignoring medical advice, Ahmadu recounted a case involving a man whose doctor had advised him against marrying a woman because both carried the sickle cell trait. The couple proceeded with the marriage and, according to her, continued to experience difficulties.
“A medical doctor advised a man not to marry his wife because they both carried the sickle cell trait. They went ahead anyway, and they are still suffering to this day. Life is one thing; the choices we make are another,” she said.
The event’s master of ceremonies, Emeje Charity Aliojo, popularly known as Chaicon, reinforced the importance of awareness by recounting the experience of Umi, a schoolmate of hers at Federal Government College.
Umi, who was about 10 or 11 years old, frequently fell ill. Her condition raised questions about the decision to send her to boarding school and whether her parents fully understood the care she required.
Recalling her concerns, Chaicon said: “Was she a burden to her parents? Were they trying to escape in reality? Were they looking for other people to care for her?”
The story highlighted the difficulties children with sickle cell disease may encounter when their condition is poorly understood and the importance of having people willing to provide support.
Chaicon also stressed the responsibility of parents to seek reliable information rather than allow ignorance to expose their children to avoidable suffering.
“It is painful to see a child groaning in pain, especially when the parents are not ignorant by circumstance but by choice,” she said, adding that society already had the tools needed to improve awareness.
“In the past, ignorance could be excused. Today, even if you need to borrow money to test your genotype before marriage, do it,” she urged, warning that failure to make informed decisions could lead to repeated hospital visits.
She described Odiba’s decision to write the book as an act of service, noting that the publication was intended to help people understand the condition and make better-informed choices.
“This launch is not about money for the author; it is about saving lives,” she said, commending Odiba for turning her personal experience into a resource for others.
Evelyn Onyilo, a former president of the Nigeria Association of Women Journalists (NAWOJ), also highlighted the importance of information in helping people cope with sickle cell disease.
She recalled the experience of a young girl who endured frequent hospital visits and often felt different from other children because of her condition. Although gaining knowledge did not immediately eliminate the girl’s difficulties, it helped her understand her situation and gave her hope.
“The circumstance did not suddenly disappear, but something important changed. She now had knowledge, and the knowledge came with hope,” Onyilo said.
Her account reinforced the need to make reliable information accessible to children and families, particularly those struggling to understand the condition.
The President of the Wives of FCT Traditional Rulers Association, HRH Hajia Hauwa Ibrahim Adamu, pledged to mobilise royal mothers across the FCT’s 17 kingdoms to promote sickle cell awareness and encourage greater support for affected persons.
Recalling her own experience with a schoolmate, she said the absence of adequate information had contributed to the community’s inability to understand the condition and its consequences.
“We never knew exactly what sickle cell was. Unfortunately, before we finished, the only son of this teacher died. It was so disheartening, and that was the only child he had,” she recalled.
Adamu said misconceptions about sickle cell disease remained widespread in some communities, where the condition was sometimes wrongly attributed to witchcraft rather than recognised as a medical condition requiring appropriate care.
“The book is signalling in our communities. There is fear, stigma, and misconception about sickle cell. People call it witchcraft. This book, written by a survivor, will tell the truth. It is a medical condition that needs love, knowledge and care,” she said.
She urged communities to treat people living with the condition with dignity and compassion, stressing that their opportunities for education, marriage and fulfilling lives should not be restricted by prejudice.
“We must support our warriors with love, not shame. We must ensure they go to school. After school, they should marry and live full lives,” she said.
Adamu commended Odiba for using her personal experience to educate others, describing the book as a resource that could help families confront misconceptions and improve their understanding of the disease.
“You have turned your pain into a guide for others,” she said, promising to take the publication to traditional palaces, women’s gatherings and community meetings to widen its reach.
Book reviewer Margaret Okolo Dideo highlighted the publication’s five chapters, which cover Odiba’s childhood, the medical aspects of sickle cell disease, inheritance, stigma and the emotional and financial burden of care. She called for its translation into local languages, alongside community education, free treatment and mobile laboratories to expand access to screening and care.
Odiba’s husband, Pastor Samuel Odiba, urged churches, mosques and other faith-based organisations to include genotype testing in marriage counselling to promote informed decisions among intending couples.
For Odiba, the launch marks another step in her advocacy. Having turned years of pain into a mission to educate others, she hopes her book will improve understanding, challenge stigma and encourage compassionate care for people living with sickle cell disease.
