By Kesiena Ikeke
The human body is capable of enduring many forms of agony, but for those of us born with sickle cell anemia, pain becomes a constant shadow. It is searing, unpredictable, and capable of tearing through bones and joints without warning.
Yet, growing up in Nigeria, I learned very early that the physical pain was only half the battle. The deeper, more permanent scars came from the people around me.
In many parts of West Africa, the lack of medical education has turned a genetic blood disorder into what many wrongly see as a spiritual curse. As a child, I wasn’t just a patient; I became a target.
In a society that did not truly understand hemoglobin genotypes, I faced rejection, isolation, and cruel accusations. My anguish eventually became my inspiration.
Children like me are often branded “evil” or seen as financial burdens sent to punish their parents. Because of poor medical care and desperate experimental treatments forced on me instead of proper medication, my body now carries physical scars. But the emotional scars run far deeper.
Sickle cell anemia has cost me family relationships, friendships, and even romantic relationships. I have had people, especially those who once claimed to care about me, look me in the eye and say, “You won’t live long,” “Sickle cell patients don’t usually survive.” Some even say, “they said you are possessed.” Those words cut deeper than any crisis ever could.
I have endured unbearable pain. I have cried in darkness, in cold, and in silence. Living with sickle cell anemia often feels like walking through fire.
Imagine battling the most brutal physical and emotional pain imaginable, only to look into the eyes of family and friends and see resentment instead of comfort.
That trauma forces you into heartbreaking questions about your future: Why should I get married? Why should I bring children into a world this cold? If something happens to me, who will protect them from the cruelty I survived?
The physical crisis of sickle cell is already more than enough for one human being to bear. We should not also have to battle stigma, rejection, and cruelty.
Moving to the United Kingdom completely changed my perspective. Here, I saw a different reality, one where sickle cell anemia is treated not as a spiritual failure, but as a medical condition deserving dignity, care, and proper management.
Even more touching is seeing experts, researchers, and advocates, many of whom do not have the condition and are not directly connected to it, fighting passionately for us.
Research is ongoing. Awareness is growing. Hope exists. For the first time, I found a community that became my chosen family and gave me the compassion I was denied growing up. But my experience should not depend on luck or relocation. Every sickle cell warrior deserves care, regardless of where they are born.
This is where the system must change, and where we must face hard truths. In countries like Nigeria, where infrastructure is lacking, parents are left to shoulder impossible medical bills for things as basic as folic acid or life-saving blood transfusions.
The government must intervene; we need subsidized care and support because no one should have to choose between feeding their family and surviving a crisis.
Furthermore, we must be honest about our future: Love is never enough. If you have the sickle cell trait or are a patient, you must prioritize knowing your genotype before choosing a partner. Do not marry simply because of love and bring a child into this world to go through this lifetime of torture. It is a choice you must make with your eyes open.
To my fellow warriors: I know the struggle. I know what it is to be isolated, to miss out on bonfire nights or parties, or to play under the rain like every other child, to cry always, to be prevented from most of the things your mates do.
But you must live a life of “selfish” discipline, choose yourself first, drink fluids 24/7, eat well, and rest well, because we know our limits. I have been sacked and queried at work for being too sick to go on. But we must keep helping ourselves, even while we demand better from the world.
We must be our own first line of defense, even as we cry out for the government and society to stop looking the other way.
This year, I dedicate my voice to every child and adult still fighting this battle in silence, shame, and fear.
Sickle cell is a blood disease, not a character flaw.
It is a medical reality, not a spiritual curse.
We don’t need false accusations, dire predictions, or rejection.
We need blood donations, proper healthcare infrastructure, awareness, love, dignity, and respect.
To everyone reading this: Please stop throwing sickle cell warriors to the wolves of stigma. Let us fight this blood disease in peace, wrapped in the care and compassion we rightfully deserve.
And just like in the words of our dear late, Warrior Dr. Neville Clare, MA. PhD. “Every warrior needs an Oscar for their troubles”.
My name is Kesiena. I was born with sickle cell anemia. I am a survivor. I am a warrior. I am beautiful. I am bold. And today, as we mark World Sickle Cell Day, I proudly join my voice with every warrior still fighting.
Kesiena, a survivor, writes from Abuja.