Experience Stories

Growing up with Sickle Cell Anaemia in me is the greatest challenge ever. Sometimes it makes me feel like life has no meaning. 
You have a lot of rules to abide by, so all the things I loved doing as a kid I couldn't do. I had to stop playing football which I liked, completely because I was given reasons not to. I can’t party freely without anticipating crisis and I love my parties. If you go against these rules knowingly or unknowingly then the pain crisis comes to take life out of you.
When the pains take over the control of my body, I wish I had someone to talk to me, not necessarily give me advice but to speak continuously as I listen and feel their heartbeat. 

This routine helps me a lot because the pains are so persistent and excruciating that I sometimes forget the essence of my existence.
I experience a lot of pains in my bones and joints, I have fever and I deal with other complications all in one attack by my Sickle Cell disease.
When I am in a crisis, the pain is usually so severe that no medication is strong enough to make me stop hurting completely. The pain sometimes takes away my physical ability, makes me unable to walk with my legs and sometimes I can’t even carry something as light as a rubber cup. In such situations, I blaspheme lol, but I ask God for
forgiveness when I realise my wrong.

Most times I look at my folks, tears in their eyes with no hope but pity for me, thinking that moment of inestimable and seemingly insurmountable pain might probably be my last on earth. Some of my friends even wish they could take some of the physical pain and share with me.
My parents played a strong role in helping me have a normal and healthy life. They gave me hope, helped me through the pains, cried when I cried, smiled when I smiled. I lost some friends over the years, some over a decade ago, and every time I’m being rushed into the emergency ward, I always feel that my time to join them has come but here I am, still in the struggle, still alive.

The idea and fact that they are in a better place, with no pain but pleasure, playing and eating freely without the fear of any crisis, makes me wish I could join them, anytime I’m in pains. 

Death has become no scare to me, because I have seen many of my type succumb to it. Lately, having Sickle Cell doesn’t really bother me only when I am in serious pains. The truth is I always look at Sickle Cell as my gift and my curse.

I became an advocate when I was about 11 years old, from advocating for Child's Right to HIV and AIDS to Youthful Media and even Global Peace and Unity. I decided to do all these because of the challenges posed to me by Sickle Cell Anaemia, to prove to the world that my type can still do extra-ordinary things if they wish to and nothing can stop them, no! Not even the UN-imaginable pain.
Nura.