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Summary: Zainab, 27, shares an account of growing up with sickle cell disease after her AS parents married despite knowing the risks, detailing a life shaped by hospitals, loss, stigma, and fragile hope. Her story is a call to prospective couples to test, think, and protect future children because faith should never replace informed choice.
My name is Zainab. I’m 27 years old. An SS. That is, I live with sickle cell disease. My parents are both AS. Oh, they knew. They were told. They are still married. They said God approved it. They said love would be enough. They said faith would cover the consequences.
I am the consequence. I was diagnosed before I was two. My childhood memories are not playgrounds or cartoons; they are hospitals, needles, and adults whispering when they thought I couldn’t hear. In primary school, I missed classes so often that teachers stopped asking why. Some classmates thought I was pretending. Some thought I was cursed. I learned early how to smile while feeling different.
By secondary school, the pain episodes became more frequent. I would wake up excited for school and end the day in a hospital bed. I watched my mates grow normally while my life moved in pauses: school, hospital, recovery, repeat. At 15, I lost my younger brother to sickle cell.
We were both SS. That day changed me forever. My parents broke down in front of me — crying, apologising, saying, “We followed faith. We didn’t think…” But the damage had already been done. Sometimes I forgive them. Sometimes I resent them deeply. Both feelings live in me.
In university, I tried to be normal. I joined sickle cell advocacy groups, volunteered with awareness organisations, spoke at events, and encouraged parents to test their genotype. People call me strong. They call me a warrior. What they don’t see is me crying alone at night after another silent pain episode. They don’t see the fear that comes with planning a future in a body that doesn’t always cooperate.
And Relationships? That’s another wound. I’ve been in love briefly. The moment conversations turn serious about marriage, children, commitment, they leave. Some are honest. Some ghost me. Some promise forever and disappear quietly. One man once said he would do anything for me. He talked about taking me abroad, better care, and a life without fear. I believed him. For the first time, my heart rested.
Then one day, he stopped calling. That heartbreak triggered one of the worst crises I’ve had as an adult. Not because of physical stress but because hope collapsed. Now I’m older. The pain episodes come differently. Less dramatic, but more exhausting. My body recovers more slowly. My fears are heavier. I ask myself questions my parents never asked each other. I am strong, yes. But I am tired.
If you are AS and the person you love is AS, please love your unborn children enough to stop and think. Faith is not a license to ignore knowledge. I am proof of that I didn’t ask to be a lesson.
But if my life can prevent another child from being born into avoidable pain, then my voice matters. That’s why I’m writing this to you. Because people listen to you, and this story needs to be heard. I hope that your audience shares this till it reaches those who are about to walk by faith and not by sight. Sickle Cell is real!.
Editor’s Note: This story was first published by mobola_ade.
