My name is Bola, I’m married with two children and I have sickle cell. I volunteer for the Sickle Cell Society, a national charity supporting people with sickle cell disease. As a volunteer, I raise awareness about blood donation and the need for more people from black-heritage backgrounds to give blood. I recently took part in a short film to raise awareness of sickle cell and of the innovative treatment of Automated Exchanged Blood Transfusion that has greatly improved my life. My parents found out I had sickle cell when I was 10 months old. They told me that as a baby I would cry non-stop for days. I had swollen joints which made them take me to the hospital where they did a genotype test and found out that I have SCD Hb SS. This is the most common and severe type of sickle cell disease.
Although I was diagnosed early in life, as I grew up, and, as early as the age of 5 years, the experiences of having sickle cell disorder (SCD) became surreal for me. I was always sick! It was very hard being a child with sickle cell growing up. It was difficult for my parents to watch their baby in pain and not be able to help.
SCD has had a lifelong impact on me both as a child and as an adult. There was a constant uncertainty in the background about whether I would live or how long for. Every hospital trip drained my parents financially and emotionally. I could not enjoy my childhood or a have proper education as I was always sick. As I got older, the crisis pain increased because of exhaustion and wanting to do more for myself. I always wanted to do more for my family, children, and those around me, but doing too much led to another episode of crisis and my children would ask, ‘Mummy why are you always sick?’
With SCD, there are specific activities I must avoid. Any strenuous activity can bring on a crisis, even getting too excited or being stressed can bring on a crisis episode. Other triggers to a crisis include infection, dehydration, exhaustion, or a change in weather conditions. Anything can trigger a crisis. I used to have crisis every single month and I would spend weeks in the hospital recovering. Those without SCD cannot comprehend what it feels like to have crisis. Doctors and scientists struggle to classify it, sometimes describing it as ‘severe, excruciating pain’. For me, the pain experienced in my joints and my chest are the most severe. It feels like a very heavy metal is pressing on my bones. As my body tries to cope with this pain, I often run out of oxygen and my whole-body system starts to shut down.
When Covid happened in 2020, it was especially scary for me because of my health. I was concerned about getting infections which is a predominate cause of a sickle cell crisis. More so, many people that suffer from SCD usually have issues with their lungs and oxygen saturation already, therefore there was a real threat to me should I have caught Covid. There was also the threat of a shortage of blood for treatment of people with sickle cell as people were not donating blood as much due to the pandemic. People with SCD were classed ‘Extremely Clinically Vulnerable’ so I had to shield at home for many months which was not very easy at all. My husband had to stay off work to minimise the risk of bringing the virus home to me.
Having been stuck at home for a long time due to shielding, I am very excited that I can go back to some sort of normality with work and especially now that I have had my two doses of vaccine. Nevertheless, I still get really worried as having sickle cell means I am highly prone to infection. This year I am also looking forward to continuing my volunteer role at Sickle Cell Society on its Give Blood, Spread Love, England project. We need more black people to start giving blood to ensure that there is enough ethnically matched blood available to meet the needs of people like me who have regular blood transfusions. If you are of black heritage and do not give blood, please consider signing up as a donor here: http://bit.ly/scsgiveblood Donated blood is essential in keeping me alive and well.