As the world mark Sickle Cell Day on Monday, Nigeria accounts for about 33% of the 300,000 children diagnosed every year with the disease.
The World Health Organization and Nigeria's Health Ministry say 25% of the country's total population are carriers of mutant genes that give rise to the genetic disorder. In 2011, Nigeria's Health Ministry initiated mandatory screening for newborns to help detect the condition early, but many Nigerian hospitals have yet to comply with the directive.
Anna Ochigbo of Nigeria has lost two siblings to sickle cell anemia. In May 2022, Ochigbo launched the nonprofit Hoplites Sickle Cell Foundation in memory of her siblings.
"We don't just create awareness on the importance of genotype testing before marriage," she said. "We go as far as conducting free genotype testing in certain communities, and we also try as much as possible to educate young people."
About 50 million people are estimated to be living with sickle cell disease globally, but Nigeria has the highest burden. Every year, an estimated 100,000 kids are diagnosed with the condition in Nigeria, according to the Health Ministry, and up to 80% die before they turn five.
Hoplites Foundation holds periodic hangouts for sickle cell warriors to meet and share their experiences.
"The participation has been really, really massive," Ochigbo said. "A lot of sickle cell warriors are coming out now. They want to connect. They want to network. They want to go to a place where they feel loved and appreciated."
Nigerian authorities in 2011 initiated universal screening for newborns at hospitals to help detect the condition early. However, the Health Ministry's sickle cell program manager, Alayo Sopekan, said many health centers have yet to adopt the measure.
"Every single child born in Nigeria should be screened at birth. Now, we have a much more refined technology. We have started training health workers," Sopekan said.
Experts say apart from screening newborns, authorities need to intensify community genotype testing to help create awareness about the disease, and to dispel myths and misinformation about the condition, including that the disease is a spiritual attack on the body.
Nigerian musician Excel Praiseworth has been living with sickle cell disease for 29 years.
Last year, he started a nonprofit called The Sickle Sound, where he uses his music to debunk misinformation about the condition.
"We've been writing songs. We have the sickle sound, which has gone far and wide, and it's beautiful to know that warriors can listen to these songs and have solace," Praiseworth said. "Nigeria and the world at large should just get rid of unnecessary stereotypes."
In 2021, Nigerian lawmakers introduced a bill to screen couples before they get married, but the bill was suspended due to rights issues.
As Nigeria joins the rest of the world to mark World Sickle Cell Day, advocates are urging authorities to take interventions about the condition more seriously in order for the negative trend to improve.
