Growing up, I was always treated differently. I wasn’t allowed to play sports, and my mom always forced me to wear thick sweaters. No matter how hot I felt, I could never take it off because my mom did not want me to catch pneumonia.

Irrespective of the precautions I took, I would always be in pain. The severe pain crisis was in all parts of my joints, and during my teenage years, the pain doubled and really affected me mentally. I went through depression and low self-esteem because I felt I was the abnormal child among my sisters. They were lucky to have been born without the sickle cell trait, and I felt like the sacrificial lamb in the family because I had sickle cell disease.

For your reference, sickle cell disease is an inherited blood disorder where the red blood cells become rigid and sticky, causing them to block blood flow, resulting in pain, anaemia, and organ damage. It is caused by a genetic mutation in the haemoglobin protein that carries oxygen in red blood cells. It is most commonly found in people of African descent.

Most times, when the pain came, because my family members were tired of my constant pain crisis, they sometimes thought I was faking it because I didn’t want to do house chores. My elder sister even composed a song about my pain because I always cried in pain. Of course, it was a mockery song, but we were just little kids at that time and didn’t really understand what was wrong with Me.

I was bullied in secondary school because of my skinny stature and the fact that I couldn’t develop as a teenage girl. So, when my friends were getting their periods, I prayed to God just to see mine for one day. Even when their chests started to form, mine took much longer than theirs. So, I would use paper to put on my chest and then pretend my breasts were developing. I also hid the fact that I was sickle cell anaemic from my friends until I turned 19.

I got tired of lying about my condition and became bold about it. I then started researching more and more about sickle cell disease. Finally, I discovered why I struggled so much in the past. Funny enough, even though I developed much slower than all my siblings and friends, my mom has constantly reminded me that out of all her children, I started talking and walking way faster than her other children. She also reminded me that I was an intelligent lady. I realized that hiding my health condition was causing me more harm than good. I guess I was just scared of the stigmatization and bullied. But now, almost everybody outside my contact knows about my sickle cell disease, which I battled for years, and still battling.

My experience in 2020 was the hardest. I fractured my hip, was hospitalized, was in the most excruciating pain, and had to drop out of University. I was at my lowest during that time, even though I was going to die. But God kept me safe, and now I have a story to tell.

I’m turning 24 this year, and I feel very much alive. I have accepted that my sickle cell disease wasn’t a death sentence. I have also been getting testimonies from people telling me how inspirational I am for staying true to myself and accepting my health circumstance for what it is. I even have a lot of suitors (guys asking me out), which is something I can now embrace with so much more confidence.

My name is Chinenye Uba, and I’m a sickle cell advocate, student, business entrepreneur, and content creator on YouTube. I have sickle cell disease, and I use my experience to create awareness about this disease.

Facebook handle: Chinenye Uba

Instagram handle: uba9180

LinkedIn handle: Chinenye Uba blessing

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