Experts blame social media frenzy about SC genotype on poor awareness

Health professionals have weighed in on the social media frenzy following a recent disclosure by Olamilekan Agbeleshe, popularly known as ‘Laycon’, a finalist in the ongoing Big Brother Naija Lockdown show, about his genotype class.

“My genotype is SC. I don’t like telling people about it because they will feel I’m sick”, Laycon, 26, said on Monday in a conversation with his fellow finalists in the reality TV show bound to end Sunday.

The revelation has been generating a buzz on social media platforms with many commentators saying they have very little knowledge of the rare genotype class.

Some compared it with the much-known haemoglobin SS disease while others mulled over the health implications of the disease and its severity.

“My dad was SC. It was 54 years of pain for him. I don’t even know how to feel with Laycon disclosing that his genotype is SC,” @IAmMooree, a Twitter user, wrote.

“SC is bad but not the worst genotype in the world since people living with it have a greater chance of survival than those of us that live with SS. @itsLaycon is far secured than those living with SS whom sometimes consider suicide just to escape the recurring agonizing pains, ”@study Cofactor, another user, said.

Twitter user @Tae_akins said she never knew she was SC or heard anything about the genotype class until she was about to marry.

“I’m SC and I’m very ok. I’m a mother of two. Never experienced anything called crises. I live like every normal person. I didn’t know my genotype until I was about getting married. I’m not on any medication. SC is not deadly, please. Laycon is not small because he’s SC. That’s his stature.”

Experts weigh in

Meanwhile, some health experts have attributed the growing debate to poor perception and knowledge about the various classes of genotypes.

Genotype is an organism’s complete set of heritable genes that can be passed from parents to offspring. The various Hemoglobin genotypes include AA, AS, SS, AC, CC and SC.

While AA, AS, and SS are the most common genotype classes, others like SC and AC are rarely talked about.

“Sometimes, people with SC don’t even know they are SC except by chance during a test. Some women only get to know when they are pregnant because they have been fine all their lives,” Annette Akinsete, a public health physician, told PREMIUM TIMES.

Mrs Akinsete said the genotypes of both parents serve as a determinant of the genotype of the offspring.

“In the red blood cell, Hemoglobin combines with oxygen and helps us to carry oxygen around the body without which there is no complete respiration and death will occur.

“The usual hemoglobin is designated as hemoglobin AA, that means the offspring got A from the father and A from the mother.

“When either of the parents have a sickle cell trait that means they have an S. So you pick A from the father and S from the mother leading to a combination of Hemoglobin AS,” she said.

Sickle Cell

Sickle cell anaemia is one of several genetic haemoglobin disorders that afflicts a small sect of the global population.

For people whose origins can be traced to the African diaspora, the risk is disproportionately higher especially due to a lack of awareness and proper care.

Sickle cell diseases include SS, SC, CC, SD, SE, SO, SB+, SB 0.

While SS is the most common type, SC is the second most common type.

“SC occurs when you get one S gene and one C gene from your parents. This is why genotype checks are very crucial before marriage,” Laide Shuaib, a medical laboratory scientist, said.

The laboratory scientist noted that people with SC normally show symptoms of joint pain crisis similar to SS.

“The major problem is when haemoglobin C combines with S, it becomes haemoglobin S+C disease. This is more severe than C+C together but not as severe as S+S together, which is the most severe of all the diseases,” Mrs Akinsete said.

She noted that SC is common in the southwestern part of Nigeria and in some parts of Ghana.

People with sickle cell sometimes suffer a breakdown or degeneration of the hip joint/bones and end up unable to walk.

They also tend to suffer extensive, chronic leg ulcers or sores that cause them much debilitation and social isolation

Poor Perception

Mrs Akinsete said the poor perception exhibited by several Nigerians after Laycon disclosed his SC genotype is part of the reasons why such disorders have remained highly prevalent in the country.

Every year, approximately 150,000 babies in Nigeria are born with sickle cell disease, according to the World Health Organization (WHO).

Though treatment exists, and early diagnosis through newborn screening could significantly reduce preventable deaths, low awareness has left the disease unattended in many cases.

In sub-Saharan Africa, the inherited blood disorder is thought to be the underlying cause of about one in 12 newborn deaths, and the number of babies born with it each year is growing.

The suffering caused by sickle cell anemia in Nigeria is not limited strictly to the physical. Sickle cell patients are often stigmatised, the National Desk Officer on Sickle Cell at the Ministry of Health, Alayo Sopekan, had said in an interview with PREMIUM TIMES.

Mr Sopekan also cited a lack of government funding and commitment as one of the major challenges of addressing the challenges posed by the disorder.

For instance, there had been a policy in place to test every newborn in Nigeria for sickle cell disease, but insufficient federal funding had hampered those efforts.

For the more than 40 million Nigerians who carry the sickle cell gene, government resources are proving to fall far short of addressing their needs, health experts say.

Chinaza Ezeigwe, a genotype councillor, said efforts should not just be focused on prevention, but also on treatment for people already living with the disease that are being stigmatised because of their conditions.

“Efforts to tackle sickle cell disease should be focused on educating the public about the importance of knowing their genotype and understanding the risk of passing the disease on to their children.

“There should be a form of law that mandates couples to present a doctor’s report confirming their genotypes before marriage. Government, religious and traditional leaders have a very big role to play in creating this awareness,” he said.

Some Facts About Sickle Cell Disease in Nigeria

– Nigeria is the country with the highest burden of sickle cell disorder in the world.

-Over 150,000 babies are born each year with sickle cell anaemia in Nigeria.

-Over 40 million Nigerians are carriers of the sickle cell gene.

-People with sickle cell usually suffer severe pain.

-Children with sickle cell can get stroke – which could be fatal and which could leave them paralysed for life.

-People with sickle cell sometimes suffer a breakdown or degeneration of the hip joint/bones and end up unable to walk.

-Persons with sickle cell tend to suffer extensive, chronic leg ulcers or sores that cause them much debilitation and social isolation.

-Socially, they suffer stigma and discrimination.

-Bone Marrow Transplantation (BMT) is a cure for sickle cell, but it is not widely accessible and not everyone with sickle cell is a suitable candidate.