Touching Story: ‘My Pain, Worse Than Woman In Labour’ – Man With Living With Sickle Cell Disorder

78e53379b59a269a23086b9d6f06fbb1 The Sickle Cell Disorder (SCD) is generally regarded as the Black man’s cross. That has, however, not made it less difficult to bear. Ayoola Olajide has lived with the disorder for 49 years. Though he knows it is a cross he will bear till death, he still has the desire to live life to the fullest. Forty nine years old Ayoola Olajide holds a master’s degree in Sociology and Psychology from the University of Ibadan. Despite his brilliance and resilience he finds one thing almost too unbearable for him: his pains during crises. Olajide was born with Sickle Cell Disorder (SCD) and his genotype is inevitably SS. His existence with SCD, like many others with the disorder, has been so terrible than the worse labour experience that he often regretted the day he was born. “Women with sickle cell who have given birth to children the natural way say sickle cell pain is a thousand times worse than labour pain. And let me give you a quote from my memoir, ‘As usual I went home to be treated for one illness or the other, usually malaria, severe headache, abdominal troubles, jaundice, or bone pain. The last mentioned, more than all others combined, made me sometimes to rue the day I took my first breath, and wish that I had not been born’. Severe pain is one of the most frightening and most distressing aspects of living with sickle cell,” Olajide said. For him, to be sickle cell anaemia, a genetic condition that is generally referred to as being a “sickler” especially in our local parlance, “means you have to live prepared – for pain, hospitalization, being the butt of cruel jokes by others who don’t understand. It means coping with varying amounts of discomfort. “Sickle-cell disease is a unique inherited and incurable condition of the blood cells which, according to doctors, has similarities with virtually all disease conditions known to mankind. Commonly affecting Africans and those with an African ancestry, the disease is also prevalent among Arabs, Turks, Greeks, Italians (chiefly Sicilians), Iranians and Indians. As a result of migration and other factors, the disease is rampant the world over. Nigeria hosts the largest population of sicklers in the world – over 6 million at the last estimate.” And he recounted how he took animal and human wastes all in a bid to surmount his pains: “Taking urine for health is an ancient practice not limited to Yorubaland or Africa. After noting my predisposition to constant attacks of malaria, jaundice and general unwellness, an aunt asked me to rub urine on my face and she also suggested that I should drink some. In those days, we used to take cow’s urine – called eegunugo (literally the masquerade in the bottle) for stomach ache. My mother once took me to see a traditional medical practitioner for a severe case of jaundice, and cow’s urine was part of my regimen.” Asked if he had childhood friends with SCD who could not survive beyond the mythical 24/25 years traditionally believed to be the age of survival for those with sickle cell disorder as well as his take on the myth, he resorted to celestial faith and believe, positing that God is the creator, Owner, Giver of life and the only Being capable of taking same from His creatures. “Until lately, I had no friends with SCD, only relatives. There’s no magic to my socalled survival. The only explanation for life, whether long or short, is Divine Decree – no leaf would fall off a tree without Divine permission or knowledge. It is a myth that when you get to a certain age, sickle cell trouble lessens or disappears. Sickle Cell is an individually-tailored condition and is no respecter of age, economic circumstances or geographical location. This is where what is termed Karma comes in, but don’t let’s go into that. As for death, anyone can die at any age, with or without SCD,” he opined. Some people with terminal illness and fragile health condition often find comfort in living in pitiable condition, domesticating their passion and resigning to fate. Saturday Mirror was curious about the motivation behind Olajide’s robust appetite for knowledge despite his peculiar existential condition and the socio-economic clime which he has been born into. His response: “I should say SCD is the trigger for my strong appetite for knowledge. When you are recovering from illness and on your own, you have no recourse than to distract yourself, especially from pain, with books.” People with SCD would inevitably choose wiser, when it is time to make a choice of a husband or wife. It is an inevitable life partnership with an opposite sex whose genotype is AA. Considering the peculiar spiritual environment in Nigeria with theistic hang on to spiritual direction and approval for some people’s choice of a wife or husband, one would be amazed with what could have necessitated that of Olajide. Incredibly, he was ready to marry a woman whose genotype is AS despite the gruelling health implications. However, with condition attached. No children! “Despite being SS, I would have married a woman with AS if she had accepted the one and only condition I set forth: no children. But she thought I couldn’t be serious. She said children were a must in marriage and lack of it would cause problems in our marital relationship. I did not and still do not agree. I did not want to have children because I thought there was no point passing down the sickle gene (if I had a thousand children all of them would be AS – carriers – of sickle cell). I think people with known genetic conditions that could affect others adversely should minimize procreation. My choice of a wife had little to do with love – it was more of expediency. Her genotype is AA,” he revealed. And having gone through excruciating experiences but still kicking, he offered a piece of advice that is too dangerous to resist, to would be couple in terms of genotypic assessment and awareness before marriage. “I referred to Karma earlier on. Despite every care taken, I know that if a soul has to undergo the challenge of a condition such as SCD, parents who also need to experience taking care of such a child would be found. I know hundreds of couples who made every effort to run away from sickle cell but who have one or more children with the disorder. For the child or for the family, if you don’t somehow deserve SCD, you will not get it. This is why you will find well educated people having children with SCD while those who know nothing about such things – but who have no need to raise such children – not having them. “However, at the mundane level, I would advise intending couples, in particular those with a risk for bearing children with SCD, to find out as much as they can about the disorder and make an informed decision there from. Living with sickle cell is not a picnic. Watching a child in pain, spending hard-earned resources to attempt to keep a child in health, the time needed to attend to such a child, the mental strength to cope, etc., would not easily come by. “Therefore, intending couples MUST know their genotype in order to avoid two people with AS or SS marrying each other, breeding children who would live in pain and agony all through their life. This is very important,” he warned. Speaking with Saturday Mirror, Dr. Lekan Adelakun of Impact Health Serve Limited, Ikeja, debunked the mythical 25-year survival age while maintaining that children with SCD, just like other children, do overcome risk factors such as malaria, jaundice, diarrhoea, etc., as they grow older, into adulthood and maturity. “There is no magic age of survival as far as Sickle Cell Disorder is concerned. Whatever age being speculated is a mere myth and has no basis in medical science and practice. However, just like any other children, the older the person with SCD, the better his or her systems adapt to some risk factors, immature immune system that makes them more prone to early childhood illnesses and contribute to crisis period in their early life. Accordingly, as persons with sickle cell anaemia grow older, they naturally develop adaptation to some childhood diseases that were threatening their life. “Persons with sickle cell anaemia usually suffer from very severe bone and joint pain medically referred to as vasoocclusive crises. Any strain is life threatening. They are, especially in country like Nigeria with high prevalence of malaria, vulnerable to malaria, since the most common cause of painful crises is infection with malaria. It is medically recommended that people with sickle cell disease living in malaria prone areas, should receive anti-malarial chemoprophylaxis,” Adelakun explained. Advising that people with sickle cell anaemia should be cared for, Adelakun said that it is not a communicable disease but genetically inherited disorder.

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