• Thursday, April 18, 2024
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BusinessDay

Sickle cell disease: Love isn’t just enough

Pfizer raises awareness on confronting Sickle Cell disease in Nigeria

…As more Nigerians now prioritise genetic compatibility

…Churches insist on genotype test to wed couples

In recent years, there has been a growing awareness among Nigerians regarding the consequence of genetic compatibility, particularly concerning sickle cell anaemia. This hereditary blood disorder, considered by abnormal haemoglobin production, has posed significant challenges to individuals and families across the nation.

About 50 million people are living with Sickle cell disease SCD globally and Nigeria is the epicentre zone with about 4-6 million people living with the disease where 1 in every 4 Nigerians has a sickle cell trait. It is also estimated that over 150,000 babies are born annually with sickle cell disease in Nigeria, making it a critical public health concern.

According to researchers from the department of Haematology and Blood Transfusion, Federal Medical Centre, Umuahia and Abia State University, sickle cell disease (SCD) is a hereditary red blood cell disorder of public health importance globally with Nigeria the epicenter zone in Africa.

Following these traumatic feelings of perpetual pains, many families have been put in misery as a result of ignorance or willful disobedience. Some couples who decided to marry despite being told of the negative implication given their incompatibility, or those who out of ignorance married as husbands and wives are today living with the regret of “had I known.”

Sickle cell disease is ravaging a number of individuals as a result of incompatible union. It is caused by inheriting the sickle cell gene. Going by the level of awareness, many people are no longer going into such a relationship. Even Churches are doing everything possible to prevent their members from going that route; hence, they insist that aspiring couples must go through genotype tests.

Traditionally, marriages in Nigeria have been arranged or heavily influenced by familial and societal expectations, often prioritising factors like social status, ethnicity, and religion over genetic compatibility.

However, as awareness campaigns and educational initiatives about sickle cell anaemia have gained momentum, more Nigerians are starting to consider genetic factors before committing to a lifelong partnership.

“While I would not have a statistic to say there is one primary reason for the shift in perspective of the profound impact of sickle cell disease on individuals and families, I will say that there is more awareness and people are becoming informed of the implication of bringing children with sickle cell anaemia,” says Oluwatimileyin Edwin, chief executive officer, CrimsonBow Sickle Cell Initiative.

According to Edwin, Sickle cell anaemia can lead to a range of health complications, including chronic pain, organ damage, increased susceptibility to infections, and a shortened lifespan.

She added that witnessing the suffering of loved ones affected by the disease has prompted many Nigerians to reevaluate the importance of genetic compatibility in relationships.

“Couples are increasingly seeking premarital genetic counselling and testing to assess their risk of passing on the sickle cell trait to their offspring.

“Stigmatisation around sickle cell is much better, people are more empathic, and there lot more outreach helping to pass these messages of awareness. People are now trained in genetic counselling. However, there is still a lot more to do in bridging the gaps,” Edwin said.

Genetic compatibility, love and medical technology

Despite the growing awareness and emphasis on genetic compatibility, cultural and societal factors have continued to influence marriage decisions in Nigeria. Family expectations, community pressure, and the desire to uphold traditions often weigh heavily on individuals planning marriage.

Navigating these dynamics while also prioritising genetic compatibility can be challenging for many Nigerians, leading to conflicts between personal desires and societal norms.

Despite the progress made in raising awareness about sickle cell anaemia, challenges persist in overcoming it.

The notion of “love conquers all” continues to exert a powerful influence on marriage decisions, often overshadowing concerns about genetic compatibility.

Speaking with a relationship, marriage and family therapist, Olaiwola Abiola at Love Boulevard International, he said that one of the major things for intending couples is to go for professional marital counselling.

“If these couples know their onions, physiological issues and knowing rhesus factor is very important.

“The notion of ‘love conquers all’, before going into a relationship, knowing genotype is crucial, so why not save yourself from bringing sickle cell children into the world,” Abiola said.

In the same vein, Edwin also added that “A lot more couples are seeking pre-marital counselling, however, a lot are still getting married and bringing sickle cell children into the world.

“Aside from that, newly married ones who found out that they are incompatible are seeking genetic options.

“Nevertheless, there are encouraging signs of progress as more advocacy groups, healthcare professionals, and religious leaders collaborate to promote awareness and understanding of sickle cell anaemia.

“Community-based initiatives, such as educational workshops and support groups, provide platforms for individuals and families affected by the disease to share their experiences and advocate for change.

“Religious institutions are also playing a crucial role in promoting conversations about genetic compatibility within the context of marriage and family life,” she said.

Likewise, advancements in medical technology have made it easier for individuals to access information about their genetic makeup and potential health risks.

Genetic testing services, both online and in healthcare facilities, allow individuals to learn about their carrier status for various genetic conditions, including sickle cell anaemia.

Having this knowledge, couples can make more informed decisions about their relationships and family planning.

Church on genotype compatibility

Churches, recognising their influential role in shaping societal norms and values, have emerged as key stakeholders in the campaign against sickle cell anaemia. By requiring genotype testing as a prerequisite for marriage, religious institutions are not only promoting responsible decision-making but also fostering a culture of awareness and prevention within their congregations.

The emphasis on genetic compatibility reflects a broader shift towards prioritising health and well-being in marital relationships.

Speaking in an interview with Parish Priest, Christ the King Darsilami, the Gambia, Fr Kelvin Ugwu Missionary of Saint Paul (MSP), he said that in sub-Saharan Africa alone, research has it that approximately 300,000 babies are born annually with sickle cell disease.

“And of course, it comes with its devastating consequences, like infant mortality; morbidity including stroke, kidney damage, etc.

“Usually, in the church, a carrier of the disease is not allowed to marry another carrier. This is simply to prevent the possibility of giving birth to a baby with the disease,” he said.

According to the Priest, the church is also not ignorant of the devastating effect this has on couples and will support research that aims at eradicating the disease or will be therapeutic to the patient.

“The church document Donum vitae is clear about the fact that gene therapies can be acceptable as long as they’re strictly therapeutic.

“This is why, just last year, there was ground-breaking research on the treatment of sickle cell disease. It is a gene-editing therapy called Casgevy that helps modify a patient’s blood cells and reverse the problems caused by sickle cell disease. It has since been endorsed by the National Catholic Bioethics Center.

“We keep praying for God’s direction on how we can better our world and reduce pain, especially in children,” Ugwu said.

However, some sections of the society are questioning churches’ insistence on compulsory tests for married couples in their worship centres. “My people are destroyed for lack of knowledge,” Joseph Ojo, the presiding Archbishop of Calvary kingdom Church (CKC) told BusinessDay. Stating that the insistence on testing by churches is a way of putting future worries and pain aside, and actually not to put faith and spirituality away.

“In our days and times when we got married the knowledge was not there. We got married and God graciously helped some of us not to be victims. But it was not so for others who got married and found out their children were ‘SS’ and watched them grow and live in pain and later died,” Ojo said.

According to him, the insistence by churches for couples to take compulsory genotype test before they can be wedded is a way of helping people to stay free from known problems.

Corroborating with Ojo’s position, another Lagos based cleric told BusinessDay that people need to understand the difference between science and spirituality. According to him, the right thing needs to be done first in regard to the medical compatibility of couples.

“That is the problem we have in the church of the 21st century; we believe everything is faith, everything is spiritual. This is not the era of Ezekiel where bones will come together,” said Chidi Anthony, presiding bishop, Kings in Christ Power Ministries International and president, Pentecostal Ministers’ Forum (PFM).

Speaking further, Anthony said that while it was true that many people did not have the knowledge of sickle cell anaemia or what causes the disorder in the 70s and 80s, which also contributed to the high prevalence in Nigeria. “That’s why many got married not knowing their status, only to find out most of their children are sickle cell carriers thereafter. In the real sense it is their mistake and it is not just about genotype, but also blood group.

“Yes, we do not doubt the power of God but we don’t need to put God on trial. You don’t tempt God,” he said.

Anthony also disclosed that he cannot wed any couple in his church without insisting on conducting genotype and other tests, and maintained that sickle cell anaemia has nothing to do with faith or the lack of it.

“For instance, a sister and a young man came to me saying that they want to get married; I said to them you have to go for a genotype test. Incidentally, after the test it was discovered both of them are AS; AS, and I told them – I am giving you my kind advice and counseling (both of you cannot marry).

“The reason you cannot marry is because I am tired of too many prayer points. After all said and done they insisted on going to the mountain to pray. After, they came back; they said Papa no problem – you can wed us, that we strongly have faith. I said ok; I am not saying that you don’t have faith.

“I am praying also that my own faith will be added to your faith so that it can see both of you through. But, finally the spirit of God ministered to them. The only thing you can involve God are things you cannot do; things you can easily do, there is no need to involve God into it. That is why you have sense,” he said.

Anthony said that he strongly believes that churches should insist on running genotypes and other medical tests before wedding anybody in their church. According to him, it is not for lack of faith, rather it is to apply wisdom to do the right thing.

Sickle cell anaemia as a public health issue

The impact of sickle cell disease extends far beyond the physical symptoms experienced by individuals. It takes a toll on emotional well-being, strains relationships, and imposes significant financial burdens on families already struggling to cope with the challenges of managing the illness.

“The goal is to empower individuals and communities with knowledge about sickle cell disease and provide access to resources and support services to effectively manage the condition and reduce its impact on individuals, families, and society as a whole,” says a public health expert in Lagos.

He added that there was a need for a continuous advocate for increased research funding to advance understanding of sickle cell disease and develop new treatments and interventions to improve outcomes for affected individuals

“By prioritising genetic compatibility and promoting a culture of awareness and prevention, Nigeria can break the cycle of suffering caused by sickle cell anaemia and pave the way for a healthier and more resilient society,” he advised.

Sickle Cell Anaemia: disease or myth?

Sickle cell anaemia (sickle cell disease) is a disorder of the blood caused by inherited abnormal hemoglobin (the oxygen-carrying protein within the red blood cells). The abnormal hemoglobin causes distorted (sickled) red blood cells, which make the sickled red blood cells fragile and prone to rupture.

When the number of red blood cells decreases from rupture (hemolysis), it results in anemia. This condition is referred to as sickle cell anemia. The irregular sickled cells can also block blood vessels causing tissue and organ damage and pain.

Sickle cell anemia is one of the most common inherited blood anemias. The disease primarily affects Africans and African Americans.

Over the years many people have held the opinion that sickle cell is an attack from the village, with little or no knowledge that it is actually an inherited disease that affects the red blood cells in the human body.

Sickle cell anemia is inherited as an autosomal (meaning that the gene is not linked to a sex chromosome) recessive condition. This means that the gene can be passed on from a parent carrying it to male and female children. In order for sickle cell anaemia to occur, a sickle cell gene must be inherited from both the mother and the father, so that the child has two sickle cell genes.

The inheritance of just one sickle gene is called sickle cell trait or the “carrier” state. Sickle cell trait does not cause sickle cell anemia. Persons with sickle cell trait usually do not have many symptoms of disease and have hospitalisation rates and life expectancies identical to unaffected people. When two carriers of sickle cell trait mate, their offspring have a one in four chance of having sickle cell anemia. (In some parts of Africa, one in five persons is a carrier for sickle cell trait.).

Conditions that promote Sickle Cell

Red blood cells are manufactured in the bone marrow. Their unique biconcave shape increases their storage capacity for hemoglobin molecules that carry oxygen. They also make the cells pliable and soft so they can squeeze through the tiniest blood vessels in the body. In sickle disease, the red blood cells form an abnormal crescent shape that is rigid, causing the red blood cells to be damaged.

The cells are not malleable enough to get through tight spaces, and this can increase the risk of forming blood clots in the small capillaries of different organs causing the potential for organ damage. However, the sickling (distortion) of the red blood cells in sickle cell anemia?

Sickling of the red blood cells in patients with sickle cell anemia results in cells of abnormal shape and diminished flexibility. The sickling is promoted by conditions which are associated with low oxygen levels, increased acidity, or low volume (dehydration) of the blood. These conditions can occur as a result of injury to the body’s tissues, dehydration, or anesthesia.