Mr. Michael Wilson, has been living with the sickle cell for the past 29 years. He is working and studying and also enjoying life to the fullest. In this interview with Assistant Editor, Chinwe Maduagwu, he shares the life and challenges of a sickler but insists that sickle cell is not a death sentence.
TNE: As a carrier of the sickle cell, what exactly do you know about the disease?
I know that sickle cell disease, has to do with an abnormal haemoglobin that causes clotting in the blood vessels thereby obstructing free flow of the blood. The sickle cell, because of its shape does not flow easily in the blood vessels and so sometimes it causes blockage. This blockage in turn causes severe pains for the carrier, and that is what we call crisis.
When a sickle cell carrier is going through crisis, it means there is stopage or disruption of free flow of blood in his/her system. In a normal blood flow, the oxygenated blood flows out while the deoxyginated blood goes in. But for a sickler, the oxygenated blood is sometimes not able to flow out because of the shape of sickling cells.
TNE: At what point in your life did you get an understanding of what sickle cell is?
I was four years when I was diagnosed to be a sickle cell carrier. By then, of course, I didn’t really know what sickle cell was, being still a child. But I know I was always having pains and being transfused with blood. In fact, I think I was getting transfused twice a month. As I grew older though, I began to have a better understanding of what sickle cell was all about and how to cope with it.
TNE: From your experience, can someone living with sickle cell do anything to prevent getting into crisis?
Yes, for the past few years now, I have been on my own and coping. For sure, there are times you cannot avoid a crisis, but there are a few things that can help keep the crisis in abeyance. First of all, the person must keep regular appointments with his/her doctors, they must be on their routine drugs became the drugs aid the free flow of blood by preventing clotting. They help also to build the immune system.
Again, they should be able to abstain from things that are not good for them.
TNE: Are there things your doctors tell you to abstain from, whether food or activities?
As a sickle cell patient, there is nothing you are asked to abstain from. The only thing is that you should know your limit in anything and everything you do. A sickle cell patient can be a basket baller, a footballer and can do any kind of exercise, but there is always a limit. Whenever you are working or you are involved in any activity and you feel your body can no longer take it, you have to stop and take a lot of rest. You also have to take a lot of water because water helps to hydrate the body. If a sickle cell patient allows himself or herself to get dehydrated, that can lead to crisis. In fact, dehydration is one the things that brings about crisis for a sickler.
A sickler, however, should abstain from taking cold drinks, they must stay away from cold and must take water regularly. Our doctors always tell us that we must take at least 6-7 litres of water daily, because the water is essential in helping blood flow.
TNE: Do you have signs and symptoms before going into crisis or is the crisis spontaneous?
There is always a sign. The body will always tell you that, ‘yes you have over worked me,’ and at that point, you have to rest. That’s why it’s important for every individual to know and understand their body. When you are unable to understand your body signals that is when you fall prey to crisis. For most of us, when we over work ourselves, getting back home we have to take some pain relief tablets to be able to suppress whatever pain we may have later on because whenever we do stressful work it affects us when we want to relax that’s why we have to take these pain killers to be able to suppress the pain.
Secondly, it’s not good for us to expose ourselves to cold, it affects us and can lead to crisis. Thirdly, it is also not good for us to expose ourselves to mosquitoes, it affects the system. Malaria is not good for us so we must do everything to avoid it. Some other symptoms that can tell a sickle cell patient that crisis is building up include; feverish feelings, slight headache, some weakness of the body and pains in the joints. If you don’t read these signals well, it’s going to lead you to crisis, but if you’re the type that monitors your system very well, you will quickly adjust yourself, relax, sleep and eat very well; by so doing, you are able to avoid the crisis that would otherwise come.
TNE: Is it all crises that come with these symptoms or are there some crises that come without signs?
There is no way a crisis will come without sign, there are always signs. However, if one is proactive you can prevent the crisis. Apart from the things I mentioned earlier, we are usually told to check our PVC regularly. This is important because that is still one of the things that affect us also. By the time the blood level drops low and you are over working yourself, definitely you must start to feel dizzy and weak, with feverish feelings. These will tell you to see your doctor. By the time you’re able to monitor these symptoms there is no way you’d fall prey but if you’re not able to monitor these symptoms then you’re more likely to fall prey to crisis. Even as it’s coming and you’re trying to manage it, you will need the help of a physician because you will need drip and other kinds of drugs that will help you to calm down.
TNE: So there are some crises that an individual can manage without going to the physician?
Yes, there are crises that individuals can manage without going to the doctor. I will use myself as an example; for the whole of 2017, I really had a lot of issues, I was under a lot of stress. One thing that sickle cell patients don’t need is stress, anything that involves thinking too much they don’t need it, it disturbs them, it makes them feel restless. Therefore, they have to avoid over thinking and unnecessary worries. Last year, like I said earlier was hell for me because of the issues I had to deal with and I was in and out of the hospital. But from the end of December to this moment, I think I have been able to monitor myself better. Before the crisis comes I would have seen the symptoms and done the needful. Ever since then I’ve been able to manage myself with drugs that have been recommended by the doctor. I have seen that if I attack the symptoms early before it attacks me, I am able to avoid frequent hospitalisation or visits to the doctor except for routine checks.
TNE: So, now can you say that you have a better understanding of sickle cell?
Yes, by the time you understand your body and you use your medication very well there is no way you’d be falling into crisis all the time. That doesn’t mean that it won’t come. It might come in a certain way that I am unable to handle so I visit my doctor.
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TNE: Some people would say that those that have sickle cell are bewitched by people in their village, do you believe this?
Sickle cell is not about bewitchment, it is a hereditary, a disease passed down from the parents to the child. That is why we are trying to create awareness about breaking the sickle cell silence, knowing your genotype before marriage. Our massage to people is to go for confirmation of their genotype before marriage. This is something everybody has to be watchful about. An SS and AS cannot and should not get married, because they most likely will produce children with sickle cell.
Again, sickle cell is not contagious, it’s only hereditary, those times they said that children die and come back, it’s not the same child dying and coming back. I had an elder sister who was SS. I was 14 years old when she died at the age of 20 and looking back, I now know she died of sickle cell or issues arising from sickle cell. I say this because then most of our parents didn’t know how to identify an SS person, or what to do to help them. Now that I have more understanding about it and I have come to realise that the things she cried about till she died are the same symptoms any other sickle cell person would have.
Back then my mother in particular was convinced it was not ordinary. They were speculating that she was being attacked by evil forces because she was always complaining about pains all over her body. Our parents then didn’t have knowledge or understanding of what was actually happening so because of ignorance and negligence she died.
I want also to make people understand that it is not all the hospitals that know how to treat a sickle cell patient. I know of some private hospitals that only give blood and treat you for malaria, but there are some other ways to manage the disease. For instance, putting the patient on IV fluid if the PVC is okay and giving the patients analgesic to relieve the pain. It is not every time a sickle cell patient goes to the ward that he needs blood transfusion. Like when I was in my state, I was being transfused every time I went to the private hospital but since I came down to a Teaching hospital in Lagos, I haven’t been transfused for up to five years. When I go to the hospital and they check my PVC if they find out that it’s still okay and all they have to do is to give me some drips and analgesic and I will find myself bouncing back so it got me wondering why they were always pumping blood into us then. So that’s why I said that it isn’t all hospitals and doctors that are able to treat sickle cell patients, there are specialist for it .
TNE: So what’s your message to the world and to other people with sickle cell?
My message to sickle cell patients is to be careful; you should be able to go to your clinic regularly, as at when due or when a need arises. You should try to know your limit, try to locate the closest hospital which you are sure can handle your needs, monitor your body and listen to what it says to you. Know that sickle cell is not a death sentence. We should be able to break the sickle cell silence. Also sickle cell patient should avoid cold and things that will give them trouble.
For those that aren’t married, it is important to check your genotype, try to know who your spouse or intending spouse is, try to handle things that are relevant; its not about love. You should think about the child that would be produced if an SS should get married to an SS or if an AS should marry an SS.
To everyone, my plea is that they should spread the message that sickle cell is not a death sentence because most of our parents get fed up with us, most of the parents have the mind set that once they lose a child with sickle cell the other will be lost too, and some parents just let the children carry their load. They have developed the attitude of ‘if they (sicklers) want to die let them die,’ but that is not the right attitude or thinking because having sickle cell is not the end of life. Sickle cell patients have a life to live, they think well, rationally and are quite intelligent, they study hard, they struggle and hustle like every other human being.