In my early twenties I was registered as disabled. This was during my constant hospital admissions. I was no longer able to work or study which I’ve mentioned deeply affected me. I felt too young to be disabled I didn’t want to be called it, I rejected that title, I guess in some ways my body accepted that title, my body deserved that title at the time. I just did not want to accept it because I felt embarrassed about it. For a long time I’ve felt trapped by my body held back, held down, held hostage. My body was my plague not my protection it destroyed me, it destroyed itself. Dealing with a physical condition is challenging to say the least. It made me have to use my mind because that was all I had that was the only part of me that was somewhat free, it was the only escape I had, I had to try and switch my mind off of my pain and bring my focus onto something else, which is extremely difficult and isn’t always achievable. Learning to do my makeup was a huge distraction for me and
Let’s start at the beginning. What is Sickle Cell Disease? You must have heard or read a lot of scientific talk and jargon, but let me break it down and explain everything for you; the what, how and why of this disease and why we should be talking about it. Sickle cell disease (SCD) is an inherited blood disorder. While all races are affected by the disease, it is most prevalent among the black race and is the most prevalent genetic disorder in Africa. It is estimated that over 300.000 babies are born worldwide each year with SCD with over 75% of these births occurring in Sub-Saharan Africa. SCD has an autosomal recessive pattern of inheritance from parents. This means that both parents will have to be carriers of the sickle cell trait in order to give birth to a child with SCD. Every child they give birth to has a 25% chance of having SCD, a 25% chance of not carrying the trait at all and a 50% chance of being a carrier. People with the sickle cell trait usually do not have any of t