By Ekpeyong Udo

When Mary Ekaette married her husband 12 years ago in a small church in Uyo, Akwa Ibom State, no one asked about their genotypes. There was no blood test, no counseling, and certainly no warning. 

It wasn’t until their child, Emem, began to suffer unexplained bouts of fever and bone pain that the truth came out. Emem has Sickle Cell Disease (SCD), a lifelong genetic blood disorder.

“I never knew I was AS, and my husband didn’t either,” Mrs Ekaette said, her voice cracking. 

“Now, I live with the guilt every day. Watching Emem cry during crises feels like punishment for something I didn’t even know I did wrong.”

Her pain is not isolated. It’s shared by thousands of families across Nigeria, particularly in the country’s south- south, who are grappling with the harsh realities of a disease that is both preventable and devastating.

Now, in a bold new effort, the National Orientation Agency (NOA) in Akwa Ibom has launched a statewide awareness campaign to break this silence, shatter myths, and save lives.  

The campaign, rolled out as part of the World Sickle Cell Day commemoration, is targeting every corner of the state, from bustling Uyo to the most remote villages.

“This is more than a campaign; this is a rescue mission,” said Mr. Mkpoutom Mkpoutom, NOA’s State Director. 

“Sickle Cell Disease is claiming lives that could have been saved if only people had the right information. We’re taking that information to the people now, before it’s too late,” he said.

Sickle Cell Disease affects the shape and function of red blood cells, causing them to become stiff and crescent-shaped. These sickle-shaped cells clog blood flow, leading to unbearable pain, strokes, infections, and even death. Nigeria bears the highest burden of the disease globally. 

According to the World Health Organization, over 150,000 Nigerian babies are born with SCD every year and more than half of them die before the age of five due to poor healthcare and late diagnosis.

In Akwa Ibom, where cultural silence often surrounds genotype compatibility, NOA is determined to speak louder than stigma. 

“We cannot keep losing children to ignorance. We are urging everyone-parents, teachers, religious leaders-to talk openly about genotypes. It is not a taboo; it is a tool to save lives,” said Mrs. Nsidibe Udotte, Head of Community Safety, Awareness, and Compliance of NOA.

The agency’s strategy is grassroots-focused. Thirty-one local government Community Orientation and Mobilisation Officers (COMOs) have been directed to push the message deep into homes, churches, markets, and schools.  

The message is simple: Know your genotype. Talk about it. Make informed decisions -before marriage, before children, before it’s too late.

For Emem, now 9, daily life is a careful routine of hydration, hospital visits, and missed school days. 

“When the crisis comes, she screams through the night. I feel helpless, but I fight beside her. That’s why this campaign matters. No other parent should feel this helpless,” Emem’s mother said. The agency isn’t stopping at prevention alone. It’s also calling for compassion and systemic support for people already living with SCD. 

“Sickle Cell is not a death sentence. With proper care-nutritional support, hydration, medication, and emotional care-people with this condition can live long, fulfilling lives,” Mrs. Udotte explained. Indeed, there are stories of survival. Confidence Idongesit, now a final-year law student at the University of Uyo, was born SS. 

“There were many nights I thought I wouldn’t make it, but my mother fought for me and I fought too. If we had better support in schools and hospitals, more children would reach their dreams,” he said.

Jackson Ibok, Head of Media and Communications for NOA, said the campaign is as much about inclusion as it is about awareness. 

“We want a society that doesn’t just pity sickle cell warriors, but includes them in planning-at school, at work, in policy,” he said.

At the core of NOA’s message is the belief that Sickle Cell Disease is no longer a silent killer; it’s a conversation we must all have-loudly, urgently, and continuously. 

The agency is also advocating for the establishment of free genotype testing centres and government-backed public education programmes to make genetic counseling a norm, not a privilege.

For Ekaette, the NOA campaign brings hope. “I wish someone told me what I know now,” she said, wiping her eyes, “but maybe my story will save another child.”

And that, perhaps, is the power of awareness-not just in informing minds, but in healing hearts, shaping decisions, and rewriting destinies, one family at a time.