The national director of the Sickle Cell Foundation Nigeria (SCFN), Annette Akinsete, has urged persons with the disorder to live meaningful lives because it is not “a death sentence.”

She spoke during a sensitisation and awareness campaign organised by the Coalition of Sickle Cell NGOs under ‘The Red Umbrella Walk for Sickle Cell Disorder’ campaign.

“We want to speak with one voice to carry the information to the people that sickle cell is not a death sentence. It always used to be thought of as an incurable disease, but nowadays, we know that persons with SCD are living longer for decades,” stated Ms Akinsete. “We had a female carrier who died at the age of 94. As long as Sickle Cell carriers are properly treated and properly managed, they can live long, productive lives.”

She noted that the walk on Saturday was a precursor to ‘World Sickle Cell Day’, marked annually on June 19. The walk was held simultaneously in Lagos, Warri, Benin, Ilorin and other states in Nigeria.

Ms Akinsete further urged young people to know their genotype on time before they begin to date, plan for marriage, or have a family of their own.

“Sickle cell is a genetic disorder, so couples need to know how it’s inherited and how to avoid it,” she said. “Sickle cell carriers need basic medications like folic acid, hydroxyurea and malaria prevention medications daily. These medications help to prevent crises in patients.”

The SCFN director also mentioned that there are experimental medications such as arbutamine, which, in the past, patients couldn’t access but are now accessible through clinical trials.

Ms Akinsete advised eating balanced diets, drinking plenty of water, and avoiding excessive exercise and cold and heat.

Toyin Adesola, executive director of Sickle Cell Advocacy And Management Initiative and chairwoman of the Coalition of Sickle Cell NGOs, said sickle cell disease was a major public health concern in Nigeria.

She said Nigeria had one of the highest burdens of sickle cell disease globally, with a significant portion of the population carrying the sickle cell trait.

“It is estimated that over 150,000 children are born with sickle cell disease in Nigeria each year, making it the highest number of newborns affected by the condition in any country,” stated Ms Adesola.