I’m testimonial of triumph over sickle cell pains – Mohammed

Shehu Olaitan Mohammed is a chartered accountant and a sickle cell patient. In this interview with PAUL OKAH, he speaks on his recently published autobiography; life as a ‘warrior,’ how laboratory scientists contribute to sickle cell anaemia; the role of lovers; parents; doctors and society in combating sickle cell anaemia among other issues.

What should people know about sickle cell anaemia?

The first thing you should know about sickle cell is that it is basically a blood disorder and it is inherited. You can only get it through your parents if they both have the sickle cell trait. If someone that is AS marries another person that has AS genotype, there is a 25% chance that, for each pregnancy, the offspring will come out as either SS, AA, AS or SA. Of course, AS and SA is the same. The probability of having a SS offspring is even higher if the marriage is between genotype SS and AS. Also, there are other variants of the genotype like SC.

Essentially, sickle cell causes the red blood cells to take a different shape from that of the person who has AA genotype. The normal red blood cell is biconcave in shape, but for people with SS genotype, the red blood cells contort into a sickle shape. The red blood cells die earlier than the normal red blood cells. The lifespan of the blood cells becomes 20 or less days, as opposed to 90 to 120 days for those that have AA genotype or those referred to as “normal people.” That is why we don’t always have enough blood in us. That’s why you see our eyes looking yellow, because we are anaemic.

When the sickled blood cells get stuck in the blood vessels and tissues, it results in sickle cell pain (crisis). This is very painful, leading to crisis as other organs of the body will also be affected by the restriction of blood flow. People assume it’s all about pain, but it goes beyond that. The pain comes as a result of not having enough oxygen into the vital organs of the body, causing damage to those areas. That’s why sickle cell is referred to as multi-system disorder, because it can affect any system of the body.

People are conversant with bone and body pains, but it goes beyond that. You can have crisis in any part of the body. Someone can have crisis even in the brain, which is one of the causes of stroke in some people. Imagine blood that is supposed to flow to the brain being blocked, leading to other organs being affected. In a nutshell, this is my explanation of what sickle cell anaemia is, as a patient and as a layman.

Why do sickle cell anaemia cases persist in Nigeria?

The reason for the persistence of sickle cell anaemia cases in Nigeria is because the awareness is very low. Like I mentioned in my recently published autobiography, I’m a survivor: The story of my triumph over sickle cell pains, even in my undergraduate days at the Obafemi Awolowo University, Ile-Ife, some people said they were seeing someone in crisis for the first time. This is in a university environment, where people are expected to be enlightened, so what do you think is happening in rural areas? It is those that are related to warriors or the warriors themselves that understand and can tell better what they are going through. They can decide to prevent having offspring with sickle cell disorder. The only way to do that is to check your genotype and ensure that the genotype of your partner is compatible with yours. They should do their best to avoid having sickle cell children, because the pains that go with it can be overwhelming.

Love is not enough when it comes to being in a relationship that could lead to having sickle cell offspring. So, the relationship is better avoided. In fact, the first thing lovers should check is their genotype before anything else; otherwise they may end up with children with the disorder, because of their initial choice of partner.

Any end to sickle cell in Nigeria?

I see the possibility of sickle cell ending in Nigeria, but it is going to be a long term project. It is not something that can happen in the next 20 years. We are talking about those in the urban areas not being aware of sickle cell anaemia, what about those in rural areas? Another issue that may prevent the realisation of the project is the carelessness of medical laboratories. I can share experiences with you on how medical laboratories have plunged families into avoidable crisis as a result of their carelessness. For instance, there is a lady I know as a member of one of our sickle cell foundations, who shared her experience with us.

According to her, before she got married, she carried out a genotype test and the lab scientist told her that she had AA genotype, while her husband was AS. However, when they started having children, she realised that she too was AS. Can you imagine that? The couple ended up having children with sickle cell disorder. So, it is not only about people getting to check their genotype, but also the health care system being aware of their responsibilities to be up and doing. Our laboratory scientists have a great role to play in ensuring they give us the right results and not plunging families into pains as a result of their carelessness.

In fact, I always advise people: Don’t do your genotype test in one lab. Try two or three places. At least, three labs can’t make the same mistake. I know some sickle cell activists who know everything about genotypes and guiding against sickle cell, but they still ended up having SS children, just because of mistakes by lab scientists.

Can one outgrow sickle cell anaemia at some point in time?

There are peculiarities when it comes to sickle cell ‘warriors.’ The story that when you grow up to 18 years you will outgrow it is a fallacy. I explained this in the book. I even used myself as an example that when I got to 18, the crisis was even getting more severe and frequent. However, as you age, you will tend to know what works best for you. If you have five sickle cell warriors in this room, the path to treatment that all of us have taken will be different. A particular analgesic may be working for you, but will not work for me.

Also, in my book, I debunked the erroneous belief and disabused people’s mind that sickle cell anaemia is a death sentence. I believe we all have our beginning and end as mortals. No matter how excellent your health is, you will surely die one day as a human. Death can come at any time. For instance, I mentioned a friend that died in a road accident. He was SS and had the fear that he will die from the condition, but he ended up dying in a road accident and not from sickle cell. So, sickle cell ‘warriors’ and caregivers should be positive. They should do their own part by accessing healthcare, observe the dos and don’ts and then leave the rest to God. You must not fold your hands and wait for death, but do your best to surmount in life. You should never entertain that fear of death. As Sickle cell warriors, availability and accessibility of health care are important in the management of our status.

Fortunately, my father is still alive. He is in his late 80s and very fulfilled. My mother died at 80 a fulfilled woman too, seeing me grow up to adulthood, marry, have children of my own and give her grandchildren; even as a ‘warrior.’ Presently, even my father has great grandchildren, so you can say that my parents are fulfilled.

What is parenthood like as a sickle cell ‘warrior’?

Presently, I manage myself very well. My children always come to check on me to ask if I have taken my drugs. I have also enlightened my children on relationships and the issue of genotype. They all have AS genotype and can only marry people with AA. I know what I went through under the care of my parents as a sickle cell warrior, so I won’t want my children to go through that with their own children.  

There is a great difference working for someone and working for yourself. Now, I have time for myself and can fix my own meetings. Unlike before when the people I worked for fixed meetings at times that were not convenient for me, I call the shots in my own business. My business ensures I have adequate time for myself and that I work less under pressure. However, in the last 5 months, I worked seriously under pressure to ensure that the book was completed to meet up with the advertised launch date. Even when I thought I would go on holiday after the book launch and have enough time for myself, I am still in the office working to meet up with the many things I have to do for clients. That’s the difference between working for people and working for yourself. If I was working for someone, I would have proceeded on leave, but here I am working to retain my clients. The good thing is that I have time to manage the situation.

Lastly, what advice do you have for the public?

Let me start with patients.  Yes, we are going through hard times, but no matter the challenges we are going through, we can still survive. In the book, I mentioned something about our spiritual life. Our spiritual life is very important. This aspect has really helped me in many situations that I suffered depression. By the way, depression is very common among sickle cell warriors. We question whether this is how we will live the rest of our lives, depending on people and going through pains upon pains. So, when the life of “normal” people is not easy, don’t expect that yours will be. However, no matter how bad a situation may be, the God who created us will see us through. We only have to trust in Him.

On our part, we should keep to our medical regime. Parents should know that they brought sickle cell warriors to the world. As such, they have the responsibility to take care of them. No matter the situation, you should know that the children are your responsibility. We have many stories of husbands abandoning their wives due to crisis of sickle cell warriors. The woman did not give birth to the SS child alone, so the husband should be supportive. So, parents should never abandon their children.

To the hospitals, we should realise that sickle cell warriors don’t enjoy visiting the hospitals if they can help it. They label us as people who crave for particular injections, but it is not of our own making or volition. Agreed that some of these injections are addictive and opiod-based injections that sickle cell warriors could get addicted to, but it is not just for the fun of it that we take them. If we don’t feel pain, we won’t be in the hospital in the first instance, so they should show more empathy and understanding. They should treat us with respect. The public hospitals should realise that the number of doctors that any hospital will employ is the function of the number of patients that visit the hospital.

So, if we don’t come, the consultants will not have where to work. So, they should look at us as partners in progress and not as if we come to the hospital just to disturb them.

On the part of government, I advise that sickle cell should be given more priority as one of the major health concerns of society. There is an ongoing debate of whether sickle cell warriors should be grouped under people with disabilities. In many cases, sickle cell leads to disabilities in many warriors. So, shouldn’t the special privilege given to people with disabilities also be extended to sickle cell warriors? This is one aspect the people in the health sector should look into.

The society generally should know that sickle cell is not death sentence. It is simply a blood disorder, which we inherited from our parents. So, they should treat us as normal human beings, not discriminate against us.

Unfortunately, the government is not doing much in the creation of awareness about sickle cell anaemia, whether in the rural or urban areas. For instance, June 19 was Sickle Cell World Awareness Day. What programme did government organise to commemorate the day? In which way did government bring support to sickle cell foundations marking the day? Personally, I didn’t see that support from most of the government agencies we wrote to.

In conclusion, society, parents and caregivers should know that sickle cell is not a death sentence. It is just a blood disorder that is surmountable, but it needs strong support from all concerned.