Living with sickle cell anaemia

For Raph Wangutusi, a 19-year-old journalism student, living with an untreatable disease that worsens over time means living every day purposefully.

My mother tells me that when I was one-year-old, I started experiencing joint pains. At the time I was living with some relatives in Bungoma while she lived and worked in Nairobi. She couldn’t afford to raise me in the city. Soon, I learnt to walk but when the pain set in, I couldn’t  move and my bewildered aunts would take me to the hospital where they would put me in a cast thinking that I had broken a leg or an arm.

One day while visiting my mum in Nairobi at the age of 5, I experienced one of these attacks and I was rushed to Kenyatta National Hospital where tests revealed that I was suffering from sickle cell anaemia. I was put on daily medication and I went back to the village where I continued to manage my condition. Medics had said it couldn’t be treated. At age 10, I moved to a school in Nairobi since mum had by then become financially stable. My classmates were very fascinated by the fact that I was always carrying medicine to school and my mum; in a bid to help me escape the stigma, sent me to a different school. Unfortunately, a teacher, obviously naive to my condition,  announced in front of the whole class that I had blood cancer. He was trying to explain the reason why I was always away from school. Back then, I would be in hospital for at least two weeks in a month. Despite all that, I pushed myself really hard and always posted good grades. In high school, other students despised me because I was allowed to keep my hair long while they had to get clean shaves. The hair on my head kept me warm. Stress, cold and a lot of heat translate to a lot of pain in people with sickle cell anemia. Also exhaustion and too much excitement can plunge one into deep pain.