Sickle Cell Disease: A Disease Religion And Love Cannot Cure

By Ogungbile Emmanuel Oludotun
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I know a bit about love. I know it's the 'many-splendored thing' or it's all we need, and sometimes it's even a battlefield. But regardless of how you define it, love can often be hard to express or put into words. It's a beautiful thing. Leastways, as I'm familiar with love, so I'm versed with religion. I know a bit about religion, I know it's like compassion that is praticed like dancing. You must do it and practice diligently day by day. I also know that religion is meant to teach us true spiritual human character. It is meant for self-transformation. It is meant to transform anxiety into peace, arrogance into humility, envy into compassion, to awaken the pure soul in man and his love for the Source, which is God. Anyway, it was in my church on Sunday that I was a bit fussed, frustrated and mostly dissapointed at the disposition of some of our highly respected and spiritual brethren. You wouldn't want to believe what I heard from their almost annoying speeches, of how they related spirituality with the issues of blood tests(genotype), encouraging unmarried couples to marry if it is 'God's will', without them getting themselves tested for their genetic identification. Boom, I was dissapointed!.

Without no further delay, we know when couples who have repugnant genotype marry themselves, or when both parents are carriers, there is a 25% chance that a pregnancy will result in a child who is affected with sickle cell disease (SCD). Studies shows that affected individuals develop red blood cells that become sickled in shape, resulting in cells which block small blood vessels, reducing the flow of blood through the vessels and damaging the tissue that is served by them. Hence, there's problem which might not be resolved, the resulting pain can be terribly bad and can interfere with many aspects of the innocent baby's life, including education, employment and psychosocial development . In severe cases, massive destruction of red blood cells can lead to severe anemia and even death.

So if incompatibility of the parents can lead to uncomfortability of the child, if the discordant in genetic formation of parents can lead to psychosocial development of a child, or even death, why don't we preach against couples who are antipathetic by genetic constitution, why don't we lift the veil of ignorance and hypocritical understanding of couples towards this genetic match up before entering into never returning bridge of marriage? Wherefore, this article shall talk about what conflicting gene are, the negative role of love and religion in the course of sickle cell disease.

Once more, today, SCD is seen in the Arab world and in Western countries, where it affects predominantly people of black African and Caribbean origin. However, in a World Health Organization supported survey in disease control priorities in developing countries, the vast majority of SCD occurs in sub-Saharan Africa, which accounts for approximately 75% of the 300,000 global SCA births every year, with an estimated 50–80% of affected children dying before adulthood. Again, according to WHO, In Nigeria, it is estimated that about 150,000 children are born annually with SCA, with a prevalence rate of 20 per 1000 livebirths. Approximately 24% of Nigeria adults are sickle cell carriers. In Enugu, south east Nigeria, and Kano, north west Nigeria, prevalence rates of 22 and 40.5% respectively have been reported.

That you can remember in from the book of old Nigerian history, SCD is one of the leading inherited risk factors for childhood death in Nigeria and affected children historically have been referred to as 'Ogbanje' because it was believed they will be reincarnated and die again to cause further sorrow for the family. With advances in knowledge about the cause and clinical characteristics of SCD, myths and misconceptions surrounding the disease are being already tuckered out, maybe? Interestingly, unlike some inheritable genetic disorders, sickle cell carriers are considered normal and do not suffer any form of discrimination or stigmatization in Nigeria, so say BMC Medical ethics.

According to the Center for Disease Control, People with sickle cell disease (SCD) start to have signs of the disease during the first year of life, usually around 5 months of age. Symptoms and complications of SCD are different for each person and can range from mild to severe. The reason that infants don’t show symptoms at birth is because baby or fetal hemoglobin protects the red blood cells from sickling. When the infant is around 4 to 5 months of age, the baby or fetal hemoglobin is replaced by sickle hemoglobin and the cells begin to sickle. SCD is a disease that worsens over time. Treatments are available that can prevent complications and lengthen the lives of those who have this condition. These treatment options can be different for each person depending on the symptoms and severity.

Today, an average Sickle cell patient experience episodes of pain, called a pain crisis or a vaso-occlusive crisis. They occur when sickle cells block small blood vessels in bones, which causes pain. Pain usually occurs in bones and joints. The pain can vary from mild to severe, and may come on suddenly. A common symptom in babies and young children is when small bones in the fingers and toes become swollen and painful, this is known as dactylitis. Episodes of tummy pain can occur if sickle cells block blood vessels in your abdomen. Again, studies also shows that there is acute chest syndrome, this occurs when there are blocked blood vessels in the lungs and can sometimes occur with a lung infection.

Acute chest syndrome can start a few days after a painful sickle crisis. It is most common in women who are pregnant or who have recently had a baby. People with SCD are more prone to severe infections, particularly from certain types of germs (bacteria), which can cause pneumonia, meningitis, septicaemia or bone infections. Also, there is anaemia, which is a lack of haemoglobin in the blood. As mentioned above, people with SCD will usualy have a moderate anaemia, which does not usually cause problems. However, at times, people with SCD can get a severe anaemia, which can be serious. It may come on very suddenly or more gradually.

According to the Management of Sickle Cell Disease in Pregnancy; Royal Colege of Obstetricians and Gynaecologists, U.K, the cause for this SCD is inherited (genetic). It is a change in the genes which tell the body how to make an important protein called haemoglobin. To get SCD, you need to have two altered haemoglobin genes, one from each parent. If you only have one of these genes, you will have sickle cell trait, which is very much milder. Pathetically, the most common type of SCD is where you have two sickle cell genes (sickle cell anaemia). Other types of SCD involve one sickle cell gene plus another abnormal haemoglobin gene of a different type.

Again, what happens to the sickle cells? studies shows that the sickle cells containing mostly HbS are harder and less flexible than normal red blood cells. So, they can get stuck in small blood vessels and block them. This can happen quite suddenly, causing various symptoms which are known as a sickle cell crisis . Repeated blockages can also lead to complications occurring. The sickle cels are destroyed more easily than normal red blood cells. This means that people with SCD tend to be short of red blood cells and have a moderate and persistent anaemia. A moderate anaemia is not usually a problem because the HbS (the different haemoglobin) carries oxygen well, and the body can compensate. However, you may get bouts of severe anaemia for various reasons.

Today, when sickle cell brings so much pain to the family of the victims, do we want to talk of swelling in the hands and feet usually? Do we also want to talk about when sickle cells travel through small blood vessels, they can get stuck and clog the blood flow. This causes pain that can start suddenly, be mild to severe, and can last for any length of time. Do we also want to talk about anemia? Infection? acute chest syndrome? Splenic sequestration? Vision loss? Leg ulcers? Stroke? Deep Vein Thrombosis (DVT) and Pulmonary Embolism (PE)? Other complications? Hence, while we can say some of these are treatable, they also come with their consequences. So if couples will not want to suffer from all these dirty complications why not prevent? Yes, we know Bone marrow transplantation offers a potential cure for SCD, maybe? However, it is very expensive and largely unavailable in Nigeria. Indeed, the first ever bone marrow transplant in Nigeria was only recently reported, at University of Benin Teaching Hospital. So, why don't we focus our attention on preventive efforts than go ahead to bear out these unapologetic responsibilities?

Pathetically today, some religious fanatic people are of the opinion that two genetic conflicting people of different genes can go ahead to marry themselves, if it's 'God's will'? My question is, who created this Gene? Isn't it the same God himself that created this gene, and does he not know that some people won't just be perfect match for themselves? Yet again, some go ahead with expectations for miracles, ask me how many people do experience God's miracle? Is it the over 300, 000 victims? Yeah, there are pre-natal diagnosis and the termination of affected pregnancies is possible, but is widely regarded as ethically and religiously problematic in Nigeria. Abortion is also morally and constitutionally illegal in Nigeria. So what's the point?

So now, how do we tell our many religious crusader that being religiously unpolitic is dangerous? How do I tell my Sunday school teacher that he should not marry a person whose genetic constitution is not compatible with his? How comprehensive will my pastor tell this ignorant militant members that there's a legion of excruciating responsibilities ahead? How can we tell our Christian brethren that the ratio of miracles in unmatched marriages are very few? How do we tell them that the victims might get damaged to body organs (like the liver, heart, or kidneys), tissues, or bones because not enough blood is flowing to the affected area? What about malnutrition and growth retardation among adolescents can cause a delayed onset of puberty and, in males, infertility? How do we tell them that religion doesn't cure SCD?

Again, there's love. I know what love is, but regardless of how you define it, love can often be hard to express or put into words, maybe? But whatever way you want to define love, I know love is not blind. So if love is not blind how can lovers go on in the name of love to marry themselves foolishly, causing problem for themselves? How will lovers decide to act cockeyed in decision making? Who else still practice love so harebrained like Romeo and Juliet? Who else will still takes avoidable risk? How will lovers make their child/children suffer from Gallstones? Maybe painful erection of the penis, called priapism, that can last less than 2 hours or more than 4 hours. How can they?

So If religion and love cannot cure love? What role will our religious leaders play? What role will our parents play? For some religious centers, most especially churches, I've seen many churches take precaution against SCD through premarital screening, that is, screening engaged couples prior to the wedding, maybe it has become a key strategy for the prevention of SCD in Nigeria.

Premarital screening for SCD has been adopted by many churches in Nigeria. Yes, a study conducted in 2004 found that premarital sickle cell trait screening was a pre-condition for a church wedding in 58.8% of cases. The percentage may be even higher today as many churches in Nigeria (especially in the south eastern part of Nigeria) include premarital screening for SCD as part of the premarital counselling process and often insist on reviewing the test results before conducting the wedding. When both individuals are sickle cell carriers, the church discourages them from marrying. Some church denominations, especially in Enugu state, go further and refuse to wed couples when both individuals are sickle cell carriers. Some churches even go to length to discourage sickle cell carriers from marrying, and even denying them a church wedding, represents a significant dis-incentive to marriage.

With the intention that premarital screening is aimed at identifying intending couples where both individuals are carriers and counselling them. Premarital screening involves educating the couple and offering them accurate and unbiased orientation to assist them in making an informed decision. It is believed that, with proper counselling and education, most intending couples will discontinue the relationship, avoid having children, or adopt children. The level of awareness and acceptance of pre-marital genetic screening for SCD in Nigeria appears to be high, is it?

On love matters, I know Maya Angelou once said love has no barriers, but is it barrier like Sickle cell disease? Love should be sensible enough to telling us lovers how to make decisions that won't affect their future. Parents should pressed on to their adolescent children on the need to avoid a partner that is a carrier of SCD, telling them of the consequences that comes after it. I just hope they listen to that. Finally, it's evident that there are some preventive pharmacotherapeutic agents likes Penicillin, Volate, Vaccines, red blood cells transfusion, and again there are a multitude of therapeutic agents under investigation for disease modifying treatment of sickle cell disease, but as stated previously, hydroxyurea is the only agent that is currently widely available. Hence, Sickle cell disease is a chronic, debilitating disorder with a myriad of symptoms that make disease treatment challenging. So now, while there is a need to treat the existing victims of SCD, there is also the urgent need to preach the message against incompatibility of genetic constitution, as SCD is preventable. We should know emphatically that love and religion cannot cure sickle cell.