For more than six decades, Pastor Bayo Funso Adaramola Esq., J.P. has lived with sickle cell disease, overcoming challenges that many once believed would limit his potential and shorten his life. Today, he stands as a testament to resilience, faith, and purposeful living.

As a legal practitioner, General Overseer of Jesus Light Ministries Worldwide, and Chairman of Sicklesafecare Foundation, he has dedicated himself to creating awareness, providing support, and advocating for better care for people living with sickle cell disease.

In this exclusive interview with Christian Benefits Magazine on his triumph over Sickle Cell Anaema, Pastor Adaramola shares his personal journey as a sickle cell warrior, discusses the burden of the disease in Nigeria, highlights recent advances in treatment, and offers a message of hope to sufferers and their families. Below are the excerpt

Sir, kindly introduce yourself to our readers and tell us about your current position in the Sicklesafecare Foundation?

My name is Pastor Bayo Funso Adaramola Esq., J.P., a Pastor, General Overseer of Jesus Light Ministries Worldwide, and a legal practitioner. I am also a warrior and the Chairman of Sicklesafecare Foundation, a foundation devoted to advocacy in Sickle Cell Disease, its management, and treatment.

What inspired your involvement in the fight against sickle cell disease, and how long have you been engaged in this cause?

My inspiration to begin the foundation is derived from lived experience. A warrior myself who has received the grace and mercy of God to remain alive and healthy, I feel a responsibility to share my experience and help others living with the condition. I have been privately involved in counselling and providing medications to young people with the condition for some years now. However, I decided to formalize my intervention by registering the foundation with the Corporate Affairs Commission alongside my sister, Mrs. Oyebola Awodeyi, my son, Olumide Adaramola Esq., and my daughter, Shekinah Adaramola, as trustees.

Can you give us a brief overview of the Sicklesafecare Foundation; its vision, mission, and key activities?

Sicklesafecare Foundation was started by me alongside my sibling and children, inspired by my personal journey of living with the condition for over six decades. Our vision is to contribute to knowledge and awareness about this invisible disability and alleviate the challenges faced by sufferers. Our mission is to improve awareness and provide free medical counselling and medications to young sufferers.

For the benefit of our readers, what exactly is sickle cell anaemia, and how does it affect those living with the condition?

In simple terms, Sickle Cell Disease (SCD) is a genetic blood disorder where the body produces abnormal haemoglobin called sickled haemoglobin. When the haemoglobin sickles, it clumps together and blocks small blood vessels, leading to severe pain in different parts of the body. This is known as a crisis. Because of the abnormal haemoglobin, anaemia may also develop. Over time, repeated blockages can damage organs such as the spleen, lungs, kidneys, eyes, and brain, and may even lead to stroke. Importantly, SCD is not contagious; it is inherited from both parents.

How prevalent is sickle cell disease in Nigeria, and why does the country continue to bear such a high burden?

Nigeria is the sickle cell capital of the world. According to the World Health Organization, about 150,000 babies are born with SCD in Nigeria every year, and sadly, over 100,000 die before their fifth birthday. More than 50 million Nigerians carry the sickle cell trait. This burden remains high largely because of limited awareness and inadequate knowledge about the condition and its causes.

What are the major challenges faced by people living with sickle cell disease in Nigeria today?

Major challenges include limited access to authentic information about disease management, lack of approved and certified medications, and the high cost of available treatments. Stigmatization also remains a serious issue, discouraging sufferers from openly discussing their condition. Workplace discrimination and stereotyping further limit employment opportunities.

How important is genotype testing in preventing new cases of sickle cell disease, and is enough awareness being created about it?

Genotype testing is the most important step in preventing new cases of SCD. It cannot be over-emphasized. Unfortunately, awareness remains very low, particularly in rural communities. Government agencies and NGOs such as Sicklesafecare Foundation still have significant work to do in creating awareness and educating the public.

What role does the Sicklesafecare play in patient care, advocacy, research, and public education?

Our foundation is privately funded and relies on donations from local and international aid organizations. We focus primarily on advocacy and public education. While patient care and research are costly undertakings that are better handled by governments and educational institutions, we support patients through periodic distribution of basic medications to sufferers.

What recent advances have been made in the treatment and management of sickle cell disease?

In recent years, significant advances have been made. Bone marrow transplantation was the first major breakthrough, and now there are more advanced options such as gene-editing therapies and other forms of gene therapy aimed at functional cures. Medications such as Hydroxyurea and Oxbryta are also available and help in managing crises and reducing hospitalizations.

How affordable and accessible are these treatments for the average Nigerian patient?

Unfortunately, many of these treatments are beyond the reach of the average Nigerian family. For example, bone marrow transplantation—the only curative therapy currently available in Nigeria—costs over ₦100 million.

What support would you like to see from government, healthcare institutions, corporate organizations, and development partners?

It is a shame that our government over the years has not done enough about this issue. We need a national response through practical measures such as passing the Sickle Cell Disorders Research and Therapy Centres Bill to establish specialized centres in each geopolitical zone of the country. Healthcare institutions also need to train healthcare workers in SCD management. Corporate organizations should sponsor free genotype testing for young Nigerians and partner with NGOs such as Sicklesafecare Foundation to reach underserved communities.

What misconceptions about sickle cell disease would you like to correct?

I would love to see society abandon all misconceptions about sickle cell disease, including branding sufferers as abiku or ogbanje, or assuming they are too weak to accomplish certain tasks and cannot compete effectively in the workplace. Many warriors have excelled in different professions and callings. I am a proud example.

What have been the Foundation’s most notable achievements over the years?

We are thankful to God for enabling us to distribute medications such as Hydroxyurea, folic acid, and Vitamin B Complex regularly to warriors identified by us. We have also carried out awareness campaigns in various locations and pray for more grace to do even more in the years ahead.

What are your Foundation’s major projects and priorities for the future?

In the immediate future, we are planning awareness, counselling, and distribution of basic medications in Lagos in August at our church, Light Chapel, Egbe-Agodo, Ikotun, and another programme in Ilorin, Kwara State, in October by the grace of God. We believe God will help us expand our reach, double our impact, and strengthen prevention efforts through counselling and increased genotype testing.

What message would you like to share with young Nigerians concerning genotype compatibility, marriage, and the prevention of sickle cell disease?

Young unmarried people should not take genotype testing lightly. I strongly advise them not to risk marriage with a person of an incompatible genotype. The pain is real, and the challenges can place serious strain on marriages and families. The risk is not worth taking unless one is specifically led to do so.

Finally, what message of hope would you like to give to individuals and families currently living with sickle cell disease?

To all warriors, there is great hope. Advances in knowledge and treatment mean that people living with SCD can now enjoy long, productive, and impactful lives. Warriors do not need pity; they need understanding. With proper management and disciplined lifestyle choices, the future is bright for all warriors.