Did you know the human body contains almost a gallon of blood? That’s 16 full cups of blood flowing through your heart, arteries and veins at all times! The miracles of the human body are fascinating, but how often is it that we think deeply about them? How often do we sit back and be thankful for all 35 trillion biconcave red blood cells we have, working tirelessly to carry vital oxygen around our bodies? 15,000 people in the UK suffer from a condition named sickle cell anaemia – a chronic genetic condition that can lead to vision loss, infections, episodes of pain, anaemia, delayed growth, strokes, lung problems and the swelling of hands and feet.

 

Sharon: Sickle cell is a non-communicable disease, meaning that it cannot be spread from person to person as covid did. Sickle cell is a fairly rare disease as it is caused when both parents of a child have the sickle cell trait and it commonly affects people of African or Caribbean descent. Sharon is Dominican, 47 year old mother of one, who published her novel Blossom tree in 2015, and has suffered with sickle cell her entire life and has kindly agreed to share her experience of living with the disease.

 

  • How does sickle cell affect you in your day to day life?

Sharon: Sickle cell affects my life in 2 major ways. Firstly, I am visually impaired due to sickle cell and the lack of oxygen going into my eyes. This means that I have difficulty with reading and seeing fine detail on everything. I also have difficulty with night vision, therefore I am restricted with some activities. Secondly, I have extreme fatigue. Due to my red blood cells only lasting for about 15 days and typical blood cells are 90-120 days, that means my body must work a lot harder. This means I am tired all the time and there is not a time where I am not tired. But it’s all I know, this is just life for me.

  • What was it like growing up with sickle cell?

Sharon: I always needed to keep warm, because being cold could be a trigger for a sickle cell crisis. This is where oxygen is unable to flow through my body due to the abnormal ‘sickle’ shape of my blood cells. This makes it more likely for my blood cells to clump together, causing pain in the joints and can affect the organs. Catching infections, stress, extreme temperatures also needed to be avoided as they were triggers so I have had to learn to manage my health and mental health. I was hospitalised numerous times whilst in school, for example once whilst I was 9 with pneumonia. Whilst I was in the ward a young boy around my age, with another genetic disease, Cystic Fibrosis passed away. At 9, this traumatic event made me feel sad, confused and traumatised. This event shaped the way I am today and perhaps is the reason I am not an overemotional person as the exposure to death early on in my life changed my outlook.

  • Has sickle cell benefitted your life in any way?

Sharon: It has taught me to be humble and always look at the bigger picture, especially related to health. It has taught me empathy and sympathy to others who are going through something and makes me want to help others. Perhaps this is why I work in diversity and inclusion.

 

  • What advice would you give to someone with sickle cell?

Sharon: Do not compare yourself to anyone else, because you are different. Adopt preventative measures such as drinking lots of fluids, keeping a regulated temperature, reduce stress levels by surrounding yourself with people who are for you – not against you. And love yourself, for who you are.

 

 Sharon has lived a difficult life which has had a huge impact on her emotional, physical and mental health. Sickle cell is a disease that is incurable but is preventable. It is important to test with the NHS for the sickle cell trait before having a child as this could pass on the disease. For more advice on sickle cell, please check the NHS website.