My name is Anthony. I was born with sickle cell anaemia some 30 years ago. Over the years, my entire existence has been limited by this sickle cell disease. As a child growing up, I used to think I was like every other child out there. I wanted to feel among, I wanted to do what they do and go where they go which always leave me in the hospital on admission or at home nursing a chronic pain all over my body.
Going to school was a major struggle. I was always shuttling between school and the hospital. Sometimes, I used to stay out of school for the major part of the term/semester. Though these missed school days seldomly reflect in my final term/semester results, the negative impact on my mental health was drastic. I was nicknamed a ‘Sickler” by some of my classmates, a name that used to give me suicidal thoughts. There was a day I told my parents I am never going to school again. You are free to call me anything, but never you call me a Sickler.
Yes, it’s true we can be anything we want to be in life, but for us sickle cell patients, the struggle is two times harder than it is for you guys with the normal genotype AA & AS. Our journey is slower and accompanied with so much pain, depression, disappointments and sometimes, deaths.
What is Sickle Cell Disease and how is it contacted?
Sickle cell anemia is one of a group of disorders known as sickle cell disease. Sickle cell anemia is an inherited red blood cell disorder in which there aren’t enough healthy red blood cells to carry oxygen throughout your body. Normally, the flexible, round red blood cells move easily through blood vessels. With sickle cell disease, an inherited group of disorders, red blood cells contort into a sickle shape. The cells die early, leaving a shortage of healthy red blood cells (sickle cell anaemia) and can block blood flow causing pain (sickle cell crisis).
From the above definition, it is clear that sickle cell disease is not like other types of diseases that arises as a result of a man’s lifestyle. Sickle cell is inherited and brought upon an innocent child by parents who either ignored or are unaware of genotype compatibility in choosing their marital partner causing that child pain, depression, organ damage/failure, disappointments and maybe death. Medically, sickle cell patients aren’t expected to live long. In my own case, my parents were told if I could make it up to 18, then I will survive, so everyone was expecting me to die before the age of 18. But thank God today I am here to share my story at the age of 30. By God’s grace, my case has proven to doctors and science that only God determines when it’s time for a man’s sun to set.
Sickle cell is relatively a black disease. Most people that suffer from sickle cell anaemia are mainly people of African origin, in fact, Africa accounts for over 60% of the people living with the disease worldwide. A record which people like me are fighting so hard to bring down. It pains me when I see young parents with kids who have sickle cell anaemia. Yes its true 30 years ago, my parents due to lack of education, exposure and awareness were naive and had no idea of anything called genotype compatibility before venturing into marriage, but at this time, it is no longer a case of been naive or been unaware, rather it’s a case of total wickedness and witchcraft to bring an innocent child into this world to suffer pain, depression, rejection and the many negative things that comes with sickle cell anaemia.
I might be alive and doing well today, but I have watched many suffering from same disease as mine fall by the wayside. I have watched friends go through one complication or the other. I have cried, prayed, gone in and out of depression wishing and hoping that these ugly complications will stay far away from me. Pain as mentioned here is not the normal routine body pain you people are used to. These are chronic pains that attacks the bone. It hits so hard like when a very large and heavy metal object hits you on a specific spot in your body and no one is there to help you take away the heavy metal. It doesn’t just hit hard and leave, some of us feel this kind of pain for days, weeks, months and even years.
We are made to live everyday of our lives taking drugs. These drugs in turn have adverse effects on our organs, damaging it every single day.
A female friend of mine who has sickle cell and also a mother of one once told me that the labor pain she had while giving birth is nothing compared to the crisis pain she always go through as a result of the disease. Sickle cell has no cure. The only thing that is close to a cure is bone marrow transplant which is apart from been very risky, it’s also very expensive. What it does is free the patient from the chronic pain, but still leaves the genotype as SS. Is this what you want your unborn child to experience in life?
WHY YOU MUST GO FOR GENOTYPE TESTING
Everything I have said so far, the pain, depression, rejection and everything that comes with sickle cell anaemia can be avoided if our young boys and girls who are not just ready to get married but wish to have kids go for what we call Genotype Testing and make their choices of a partner based on not just love but on genotype compatibility. A child with sickle cell anaemia according to science can only be born if both parents have the sickle cell traits. That is if both of them have the AS genotype or one of them is AS while the other is SS. From these findings, it is of paramount importance, for everyone to be very much aware of their genotype so as to make the right marital decisions. Believe me when I say that the love and happiness you think you have found with that man or woman will vanish once you start having children with sickle cell.
Having a child with sickle cell will drain you financially, emotionally and socially. No parent will be happy seeing their kids suffer in pain. I find it difficult looking at my mother’s eyes anytime I am crying in pains. The poor woman is always filled with tears and though she doesn’t say it, I know she hates herself for being the cause of my pain. Having a child with sickle cell drains your finances. It is always very difficult to save with a sickle cell child. Frequent hospital visits, drugs, blood transfusion and others cost a fortune. Parents/caregivers of people living with sickle cell anaemia find it difficult to keep up with their social life just as those living with the disease as a result of frequent appointments with the hospital. I ask again, is this the kind of life you plan to live?
In making marital decisions, the only way you can be free from having kids with sickle cell disease is if for example you have AA genotype, you are free to marry anyone whether AA, AS or SS. AS genotype can only go for someone who is AA likewise someone with the SS genotype. The table below will explain further.
Sickle cell is not a myth, it is real and killing us everyday. Those of us who are still alive are left to live with one form of complication or the other. Some of us are lonely and rejected. Some are depressed while others cannot afford to get the needed medication to keep up with healthy living. This is not a life anyone should wish on their children. This is why some of us warriors have taken it upon ourselves to ensure that we are the last set of people living with the dreaded but rarely talked about disease.
Everyday our lives are synonymous to a battle ground. We fight for everything we’ve got. A fight you do not even wish for your enemies. The ball is now in your court, sickle cell has no cure, but we can avoid it. The message is simple, do not just have a child without the knowledge of you and your partner’s genotype. Go for genotype testing today, lets join hands to eradicate sickle cell anaemia from Africa and the world at large.
Should you have any question or need to talk to someone about sickle cell disease, call or WhatsApp me via +2347060969049. Thank you for reading, I pray God help you to make the right choice today.
Written by Anthony Asiemo.