I first came across Ndubuisi’s Instagram profile last year through a university colleague who asked if I could help tell his life story. The first thing I noticed was the positive energy he exuded on his page. I couldn’t help but smile and even nod along to his dance moves. I marvelled at how someone who was obviously in so much pain and having a hard time with the world could be so happy and carefree.
I admired his resilience to live a happy, cheerful life against all odds. Following him on social media made me look more deeply into the one thing we always take for granted: health.
Growing up, I have always heard about sickle cell anaemia and warriors, but I never actually encountered one, at least not in the close, eye-opening way I got to watch Ndubuisi’s experience through his Instagram profile.
After following him for a while, I reached out and asked him if he was interested in sharing his experience living with sickle cell in Nigeria in honour of Sickle Cell Awareness Month, and he responded in the affirmative.
He was 12 years old when he discovered that he was living with a condition known as sickle cell anaemia. As a result, he hasn’t been able to work or run a business all his life. In his words, It has been very challenging living with it in this part of the world where there’s no support from the government to manage the disease, especially for those who come from impoverished backgrounds and have no financial means to get regular treatment and medications. When I asked him how he got by, he shared that feeding alone was difficult, let alone being able to afford the expensive medical care and attention required by the condition.
He also shared that sickle cell anaemia had affected almost every aspect of his life – socially, emotionally, physically, and psychologically. It had also prevented him from achieving some of his life dreams and aspirations. He also got stigmatised a lot, especially during his primary and secondary school days when kids were just mean for the fun of it. He remembered being called all kinds of names because of his physical appearance. He never exposed himself to extreme cold or hot weather and alcohol, he doesn’t get beaten by the rain, wasn’t allowed to do sports and doesn’t eat junk food. He had bone crisis anytime he stressed himself physically, emotionally or mentally. Extremely hot or cold weather, alcohol intake or skipping his medications also triggered the crisis.
Ndubuisi had undergone about 5 surgeries, both major and minor since he was diagnosed with sickle cell anaemia. His positive and cheerful vibes are worthy of admiration. Despite being a sickle cell warrior and an amputee, Ndubuisi said that he has always been a happy and cheerful person. He told me that he has never put on a sad face because of his condition, and being alive is something he’s grateful for.
As we rounded up our conversation, I asked if he had any last words to share with the world about sickle cell anaemia, he said that living with sickle cell anaemia is extremely challenging because we live in a society where there’s no support from the government. He emphasised that one must be financially and psychologically fit to manage sickle cell anaemia. He also stated that more awareness needs to be created so that people would stop seeing sickle cell warriors as the walking dead liable to die easily. In his words, “sickle cell warriors need love, care and kindness, and as long as he/she is getting the right treatment and medications regularly, they could achieve anything in life.” Above all, sickle cell warriors never give up; they keep on fighting no matter the pain they experience.
In this year’s World Sickle Cell Awareness Month themed Sickle Cell Matters 2022, we can:
- Donate blood to support transfusions.
- Advocate for better treatment, education and research.
- Educate others about sickle cell disease and sickle cell traits.
- Get tested for sickle cell trait especially for intending couples.
- Support organisations and other humanitarian bodies in donating care items to individuals living with sickle cell anaemia.
Whoever coined the phrase ‘health is wealth’ knew what he/she was saying.