Our pain, worse than child labour, say Nigerians living with sickle cell disorder
It’s a world of crisis, pain and unending medication; a world nobody wants or wishes for their children, but, which, sadly is the reality of people living with the Sickle cell disorder. In commemoration of this year’s World Sickle Cell Day, two young Nigerians tell Gboyega Alaka how they have been coping with the condition.
ARE you a male with genotype AS hell-bent on getting married to female with the same AS genotype all in the name of love?
True, love is a good thing, sweet and probably incomparable with any feeling in human psyche; hence worth holding tight to, even fighting for. But compare that with the sorrow of knowing that your child, interestingly, a product of that same sweet love, is saddled with genotype SS or what is commonly referred to as the Sickle Cell Disorder and thus condemned to a life of painful crises, permanent medication and the hanging threat of premature death.
According to Dr Annette Akinsete, National Director/CEO, Sickle Cell Foundation Nigeria, The pain we’re talking about is no child’s play.”
“It is a condition that is fraught with a lot of health challenges and many of them go through what we call sickle cell crisis many times a year, which comes with a lot of pain. So you can imagine that a person living with that kind of pain would not find it funny. They would actually tell you that their pain is incomprehensible to those of us who don’t have the disorder. In fact, when you ask them to describe their pain on a ratio 1 to 10, they would tell you, ‘Doctor it is 20.” In other words, your scale does not even capture their pain. In fact, those among them who have gone through labour would tell you ‘Doctor, labour pain is child’s play compared to the pain arising from crisis of sickle cell.”
Yet, this is an experience that occurs as many times as the clog occurs in their blood vessels, due to the clogging of the sickle cell. Add this to their susceptibility to other diseases, anaemia, even sudden blindness, long unhealing leg ulcer, and the possibility of early death?
Do you still want to go ahead?
Interestingly, Charity Nwafor, 24, describing the pain of crisis in a sickle cell patient, also compares it with labour pain and submits that ‘it is worse.’
“It’s beyond what I can explain. It’s more than the pain of labour. It really is painful. It starts from the joints. Everyone has their episodes of crisis, but normally it starts from the joints. In my own case, it starts from my knees with just a mild pain, then it starts to increase and spreads towards my spinal cord. When it gets to that stage, it becomes really terrible and I won’t be able to talk or move until it subsides. Usually, it can last for hours, sometimes the whole day.”
Asked how come she’s likening it to labour pain, even when she has never gone into labour, Nwafor smiles and insisted, “Yes, but I can tell you it’s even more than that.”
Curiously, Nwafor ‘s parents never knew she had the disorder until she travelled to Enugu State on holiday and had stroke as a primary school pupil, prompting the question of whether she wasn’t falling ill as a baby.
To this she says, “Well, from what I heard, I did fall ill frequently but my unsuspecting parents never tested me for the condition. If it is not detected in time, the child can have stroke, which is what happened to me. My aunt who was a matron at the University of Nigeria took me to do the test and they discovered I had sickle cell disorder.”
The fact that she was also her parents’ first child did not help matters, so they had no prior experience. Sadly, as Catholics, her parents did the mandatory genotype test and were told they were both AA; whereas they were AS.
Asked if she thinks her parents could have gone ahead and married if they knew they were incompatible, Nwafor says, “I really can’t say; I’m the first child and the only one of their four children with the disorder but my mother usually says something like if she had known that any of her child could go through such pain, she would never have married my father.”
Responding to this reporter’s remark that her parents are lucky, only one of their children has the condition, Nwafor said, rather sharply, “Maybe, but I don’t see myself as being unfortunate or disadvantaged. Again, I really don’t see myself as being sick, as my condition has taught me to get to know myself a lot better. So I believe I’m actually advantaged in a different way and I actually like it because it has taught me that sickle cell is not a death sentence. You can actually achieve more. Thank God I belong to the Sickle Cell Foundation (Nigeria), which has made me see and understand a lot, compared to when I first went there and had leg ulcer. Then I was feeling really bad. The leg ulcer is a complication arising from the sickle cell because of lack of blood flow. It took like nine years before the leg ulcer healed and I was really depressed. But now, I see it as an advantage in a different way because I know I can do whatever I want to do.”
Nwafor who says she has an OND in Science Lab Technology but would like to be a nurse to give sick people proper care, says she currently manages her condition adhering to her drug regime religiously. “I take folic acid, b-complex, anti-malaria drug, astymin, and also hydroxyurea, which is a therapeautic that helps to prevent the appearance of crisis and organ damages.”
So now she no longer has the crisis like she used to have it. Now it occurs when there is extreme cold or hot condition, which she tries to avoid. Last Monday, she says, was the recent in a long time, and it was because she had a cold bath.
On whether the condition has affected her chances of relationship, she says, “Yes it has. Two years ago, I was in a relationship with a guy with AA genotype, who didn’t seemed to care about my condition and we went on with our relationship. But along the line, we broke up. I think he changed his mind, probably due to pressure. Then I felt really terrible because I had come to see him as my pillar of support. I told my mother that I had seen a man who didn’t really care about my condition. He was my Prince Charming and I was really traumatised emotionally. The breakup really took a toll on my health and I broke down because we’re not even supposed to go through such emotional trauma. But I’ve got over that and I now believe that God, at the right time, will send the right person. Besides, I am someone who really does not like to stress myself.”
On whether she feels pressured by the general belief that people with SS are likely to die young, Nwafor laughed and said, “At first, yes. They even say their blood dries up immediately it spills on the floor. So, yes, I was scared that I would not grow into my 20s, and my parents were over-protective of me. Yes, I know people who have died, even as colleagues in school. Recently, a friend of mine at the Foundation also died; but I’ve learnt a lot and I know that I’m not going to die anytime soon. Anytime I die, I know it is God’s time. For now, I have a purpose.”
The pain is usually excruciating
32 year-old Femi Olagbaiye, who lives with the Sickle Cell Disorder, says “it is a very painful experience when a sickler has a crisis. You’d be having pains in your joints; and you can be having the pain in three different joints of your body at the same time. You can be having the pain at your back, you can be having it on your knees and you can also be having headache, all at the same time. Now picture that. I’m talking of very excruciating pains.”
This is in spite of the fact that Olagbaiye’s mum discovered that he had the condition quite early.
“I was age two, I learnt, and falling sick, so my mother took me to the Lagos University Teaching Hospital, LUTH. I was diagnosed with the condition and placed on medication ever since. My mum also made sure I attended the clinic, Thursdays, at LUTH when I was young, for checks and monitoring. So I grew up used to the fact that I need to take my drugs regularly. The drugs include folic acids, Paludrine and multivites.”
Olagbaiye, however, nurses no anger against his parents and has never blamed them.
According to him, they got married a long time ago in 1989, when very few people knew about the condition. Besides, he said they have played their parental roles excellently, taking good care of him, and making sure he had good education.
Talking about education, Olagbaiye has an HND in Estate Management and Valuation from Yaba College of Technology and says he is in earnest need of a good job as his current job at the Sickle Cell Foundation is not so well-paying and he is just managing to get by.
Asked how it feels having it at the back of his mind that he could drop dead anytime soon – at least that is the popular opinion out there; Olagbaiye simple reply that was that he has never for once believed or felt like that.
“It is true that people used to think that anybody who had the sickle cell condition can drop dead before they reach age 18 or thereabouts, but that was when the awareness and education was not enough. Now you can go for clinic, know how to take care of yourself, take your drugs, know your don’ts, which is that you should never expose yourself to extreme cold… Why should I then feel that I could drop dead at anytime. So again, I repeat, I’ve never felt like I could drop dead at anytime. I always believe I will live long and achieve my life goals.”
As a matter of fact, Olagbaiye says he knows a couple of people with the disorder, who have lived well beyond 50, 60: he also knows a woman who crossed 80.
“The CEO of Sami, an NGO focusing on people with the condition, is well into her late 50s or early 60s. To be realistic however, it is rare.”
Asked if he feels a pang anytime he hears of the death of a fellow sickler, he says, naturally, he feels bad, sometimes sad; but not because of the fear that it could be him next. “I see people who are AA also dying young.”
Sharing more light on the condition, Olagbaiye said, “There are complications when it comes to sickle cell. Some are stronger than the other – for example, you can see a sickler who suffers serious crisis and lands in the hospital; you can also see another in whom it is not that serious. In my case, there are times I have my crisis and I may not even take painkillers. There are also some who have leg ulcers; I had it when I was around age 10 to 12. Thankfully, my own healed. It’s a leg ulcer that does not heal in time. I know those whose carried theirs for five years and beyond. And that’s in addition to them having regular crisis, which is usually worse. As for me, I now have crisis only when I expose myself to cold or take cold things.”
Asked if he would ascribe his mild situation to the fact that his parents discovered and started treating him early, he says, “I don’t think so, it just varies. People that have SC for instance are stronger than those who have SS. I am SS, but my own is a bit strong. It also varies according to immune systems. Some have jaundice. In my case, I only have two challenges: the crisis and the jaundice, which is the yellowness of the eyes. And there are some who are SS but don’t have these manifestations. Then there is priapism, which is the abnormal erection of the penis. It mostly occurs at night when blood has flown into the penis and these sickle haemoglobin now block it, thereby not allowing blood to flow to other parts of the body. It used to happen to me about seven, eight years ago; but now it has stopped.
” Usually, I had to go under the shower, drink cold water before it begins to come down. However there are some priapism that does not come down and can land the person in the hospital or even render the person impotent, if not quickly attended to. Usually when it last for more than 24 hours, the person has to go for surgery. It can also occur in people without the sickle cell, though rare.”
Currently in a relationship with a partner who is an AA, Olagbaiye conceded that he once had a bit of difficulty finding love. And that, he says, is because like most people with sickle cell are usually slim, sometimes bothering on thin and ladies see them “like someone suffering from HIV/AIDS.”
Going by experience, would he approve of a marriage of two people, knowing that they have a possibility of bringing to the world a child with the sickle cell?
” No, because the outcome, the pain, is not always good. And that is why the foundations are creating awareness that people should try and know their genotype before deciding on a life partner.
Fortunately for those with the condition though, Olagbaiye says, treating the condition is no longer as expensive as it used to be because there are drugs and the various foundations and NGOs are helping. “However, Bone Marrow Transplantation, which is a known cure, is expensive.”
Asked why he is not considering the Bone Marrow Transplantation if indeed it’s a cure, Olagbaiye simply said, “At 32, I may be too old for that.”