Gloria Olutayo is a 20-year-old student in her second year of college, studying Creative Media Production and Technology. Gloria loves shopping for clothes and hanging out with her friends and family, like many other young people her age.
Gloria is a Sickle Cell warrior (someone who is living with sickle cell disorder), however, unlike most sickle cell patients, she wasn’t diagnosed at birth. Gloria she shares her story:
“I wasn’t born in the UK so my story of living with sickle cell unbeknown to my parents and I at the time, started when I was still living in Nigeria.
Although I was very ill throughout my early childhood, my parents thought the ailments I was presenting were normal. At this time, they were not aware I had Sickle Cell Disorder. I had not been diagnosed with it at my time of birth or on any of the multiple hospital visits which came to follow over the years. However, as I became older, my health continued to be a worry to them as I was getting sick, more frequently.
I started school along with my peers, however, I was soon behind with my early years learning, as I was missing many days off school due to my poor health. The disruption with my studies, was of huge concern to my parents.
The extreme pain I would experience throughout my entire body left my body feeling weak, not allowing me to have the physical strength to do anything. As I was having what we now know to be sickle cell crisis’ so often, I was now a regular patient at the local hospital.
As the years went by, further distress about my ill health and education became a huge concern for my parents and prompted them to make the decision for me to leave Nigeria for the UK, in the hope I would be able to receive better medical treatment.
It was at one of my earlier hospital appointments in the UK, after I received a MRI scan when I was diagnosed with Sickle Cell Disorder, aged 11.
Fast forward to today, a typical day for me is balancing my days attending college and attending 4-5 weekly hospital appointments to receive a blood exchange and to have MRI scans.
Living life as someone with sickle cell at times feels like I’m living two lives and the days where my life as a student is constantly interrupted, are the days I feel extremely frustrated.
People often ask me to describe what it’s like to have a sickle cell crisis and honestly, there are no words. All I can say is that I become lifeless, unable to move or do anything for myself because of how intensive the pain is.
I never look forward to attending the hospital to receive my regular blood exchanges as I feel helpless whilst the procedure is taking place. I lay on the bed for four hours and have to rely on others to do the things for me I would normally do myself, as I can’t move my arms, as it disturbs the flow of the machine which is removing my blood and replacing it with matched blood from a donor. Although I don’t look forward to the blood exchange procedure, because of the limitations it has on me, I am extremely grateful to the wonderful blood donor who is providing their matched blood for me.
Once the blood exchange is finished, I feel extremely weak and normally need to rest as I have zero energy. This is different to how individuals feel after receiving a blood transfusion, which provides the recipient with the nutrients and strength they need.
Living with sickle cell disorder affects my everyday life in such a big way. From the excruciating pains felt throughout my body, to the number of hospital appointments I attend in a year, to having no strength to carry out everyday tasks and to my body, at times, just giving up on me.
Living with sickle cell is not easy and at times, feels like a full-time job. It’s important to ensure I am taking care of myself, making sure I am doing everything I possibly can to stay healthy, despite if I look like I’m in complete good health to others. The truth is, sickle cell warriors may appear to look in good health on the outside, but people who don’t live with sickle cell will never know or understand what sickle cell warriors are truly going through.
To help Gloria and other sickle cell warriors, if you are 17 – 65 years of age and would like to donate Blood please click HERE