Written by Mrs. Jennifer Nyarko – Mensah
I was born to parents who didn’t know anything about sickle cell. I wouldn’t blame their ignorance in any way because it seems to be the norm. Those years, our parents never bothered about such conditions. Crisis, illness and other childhood conditions were generally associated with some bad omen in the family. Children were left at the peril of suffering and death. I was personally left in oblivion and this lasted till for some time.
Fortunately, I met a friend who had the sickle cell condition. It’s been a long road down in friendship. At church and at the university, we were like sisters. We shared our deepest secrets and we also had so much fun together. Yes, we did and we still do. At youth camps, we would share the same camp tent or the same room. I thank God for this friend because I have learnt a lot and I have been greatly motivated by her.
Being with my friend, I asked so many questions and I also did some reading around the subject. I got to learn that in sickle cell anaemia, the red blood is shaped like a sickle or a crescent moon. These rigid, sticky cells can get stuck in small blood vessels, which can slow or block blood flow and oxygen to parts of the body. There seems to be no cure for most people with sickle cell anaemia but treatments can relieve pain and help prevent complications associated with the disease.
Through her, I got to know more about the condition. What I read synchronized with the experiences I had with her. I experienced that it is a misconception to know, think or believe that people with sickle cell are condemned. She is very bold and a fighter: always pushing and pushing till she got what she wanted. At youth camps, which usually happened around August–September, the weather could be very cold and I will make sure she was always in her jacket to keep her body and legs warm at all times.
We are all unique: no one is the same. What causes ones crises might not be the same with another. Getting to know what causes crises in someone in a sickle cell situation varies. You may need to find out to be able to tackle it appropriately to manage the sickle cell situation.
Now, what caused me to check my sickling status? Some situations or events can really push you to do certain things you never thought of. After all that I had learnt about sickle cell, I decided to take a step to check my status. Reading and experiencing the situation made me know that it was a deciding factor to the choosing of a life partner, most especially when it comes to child birth. Even though some people took it lightly and ignored it, I didn’t. I spoke to my elder brother who is a health worker about my eagerness to check my status. Surprisingly, he told me he is AS which means that one of our parents is a carrier. “Am I also AS?” I asked myself.
I went to a hospital to check and the results indicated that I was AA. This result registered on my mind and I never bothered to check again. With AA, I knew I could marry any man provided I loved him. Any time I had to fill any medical form, I do all lab tests but I don’t do that of sickle cell. I didn’t want to waste time rechecking since I already knew the results. Without hesitating, I tell the medical officer I am AA. All my forms and documentation were completed with the revelation I gave to the medical officers.
My first year at the university, we were asked to do compulsory medicals and for the first time, I couldn’t tell the officer I was AA so I had to go through the sickle cell test for the second time and the results indicated POSITIVE. As I exhaled deeply, I spoke to one of the health workers to explain what that meant to me and I was told I am a carrier but they didn’t state whether AS, SS, SC or AC. I was a bit alarmed. I challenged the hospital to perform another test and the results proved NEGATIVE this time around. From what I gleaned, I think they were just trying to give me some results just to make me happy. I gladly took the report and submitted it to the university.
Knowing that I was ‘AA’, I never bothered my husband-to-be to check his.. In the year 2015, we started premarital counseling and as part of the basic requirements, I had to do a series of tests and attach the lab report to the form which will be submitted to the counsellor. For the third time, I checked my status and ‘olalaa’ the result was AS. I was like wooow could this be wrong too? I tried again and this time around—from a very high-tech lab—the result was still AS.
So now, you see, my first test was not accurate and I had lived with those results all my life. Now, the questions that rambled through my mind were: “What is the status of my husband-to-be? Will we still marry if he is also AS, SC, SS or AC? Are we ready to see our children go through those painful crises? These questions rolled through my mind for a while. “Oh God! We have come too far to go our separate ways,” I whispered. Although I had not yet seen his result, I was a bit anxious and nervous. Fortunately, he went for his report and he was AA. To be double sure, we checked again and it confirmed the initial result. Can you imagine the sigh of relief I had and the joy that filled my heart. God being so good, we have been married for 5 years.
One thing to take note of is that the sickle cell anaemia condition is not a death sentence. Never! I always advise people to do more than one test of their sickle cell status to be double sure about their status before considering marriage or making babies. Though it is not a death sentence, you should not put God in a tight corner knowing very well that both of you are carriers. Some claim they want to trust God for a miracle. Miracles do happen but not this manner.
I have noticed that many people think people with sickle cell live short lives but I have come to believe that it is only God who determines the number of years each person should spend on earth. Some people suffer deadly diseases or illness and they survive whereas others die because of a ‘simple headache’. I personally know people who have lived with sickle cell for 50, 60, and 70+ years whereas some people with AA die relatively young.
Let us not stigmatize people with the sickle cell condition. It has no effect on one’s intelligence. Neither does it have an effect on one’s capabilities. Get to know them closely. Love them. Cherish them. Extend a hand of care and support. Get to know your status and be double sure about it.