OGUN, Nigeria (VOICE OF NAIJA) – All over the world, June 19th of every year is set aside to create awareness on sickle cell disease.
According to WHO, an estimated 240 000 children on the continent are born with sickle cell disease annually, up to 80% of whom will die from severe infections or acute chest syndrome before age five – the highest sickle cell disease-related childhood death rate worldwide.
But even with the deliberate effort to create awareness and educate people about the disease, many carriers still suffer stigmatisation and isolation from families, friends and members of their different societies.
According to sickle cell foundation Nigeria, there are over 150,000 children born with sickle cells disease in Nigeria, and by 2050, carriers of the disease will increase by 30 per cent.
Report says vast majority of individuals with sickle cell disease (SCD) are born in sub-Saharan Africa, where easy access to high-intensity medical care may be limited to varying degrees.
Over 300,000 babies are born with SCD annually; between 2000-2021, the total global births increased by 13.7 percent to 515,000.
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The global burden incurred in sub-Saharan Africa increased from 70 percent in 2000 (318,000 of 453,000 individuals total) to 79 percent in 2021 (405,000 or 515,000 individuals total).
The sickle cell foundation Nigeria on June 20, 2024, held a virtual town hall meeting where the limitation, facts, myth, prevention, treatment, and screening of sickle cell disease (SCD) is discussed.
Notable experts from different parastatals head the panel list, releasing hope to all SCD carriers.
The panellists are Deputy Director Ministry of Health Nigeria, Dr. Alayo Shopekan, Coordinator cancer control program lagos state ministry of health, Dr. Abosede Wellington
Ambassador, Sickle cell foundation Nigeria, Mr. Olamilekan amongst others.
Ambassador Olamilekan said that sickle cell affects the physical body more compared to the mental ability.
He said as a carrier, his mind is the best replacement for his physical abilities. “Sickle cell carrier strength lies in their mind,” he said.
Mr Olamilekan narrates his experience as a carrier. “I didn’t know I was a sickle cell carrier until 2012 when i was doing my medicals in the University of Lagos (UNILAG). I have been fighting this status with my mind since then,” he said.
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He acknowledge facing criticism anytime he tries to do something in the society. “Living with sickle cell means you are different. It means your path is not going to be the same with every other person path,” he added.
However, he urged the sickle cell commumity to be more vocal both offline and online.
A participant , Vanessa decried the stigma and discrimination a sickle warrior is being subjected to even from their own family
According to her: “My family has written me off and isolated me from medical care, waiting for me to die.”
She further called on the Sickle Cell Foundation, Nigeria to do more than just creating awareness.
“Sickle cell carriers are dying in the hands of their families,” she concluded
On his part, Dr Wellington said there is no restriction law for sickle cell carrier and there is no intention to implement one.
She affirms that there are even sickle cell children out of marriage, so placing restriction in their marriage is not the best solution,” she concluded.