Living with Sickle Cell, Suffer In Silence

Ever heard of a disease with benefits? Think X-Men, people living on the fringe of society, who use their genetic mutation beneficially. Through ‘collective intelligence’ people will learn that their condition can be a benefit rather than a hindrance, they may even discover they have superhuman powers! But for people living with Sickle Cell disease, it might not seem that way.

The human body is amazing! It is a living machine constantly evolving to protect us from environmental threats, so that the human race can be successful. Over time, humans developed natural strategies to combat malaria. One such example is Sickle Cell disease. It affects people from parts of the world where malaria, is or was endemic. It is common throughout Africa and the Caribbean, with similar strains, such as Thalassemia, prevalent amongst Mediterranean, Middle Eastern, and Indian populations.

Malaria is contracted from a mosquito bite. The malarial parasite enters the blood stream and feeds off protein in red blood cells. Sickle cell is the bending of some red blood cells into a sickle shape, to prevent the parasite from multiplying, and thus causing death. Early ancestors of people with Sickle cell adopted what is known as sickle trait. Resistant to death from malaria, these individuals embodied “survival of the fittest” tactics, and were prosperous.

Sickle Cell is inherited, which means infected individuals may pass the gene to their children, which doesn’t present a problem, unless the child inherits sickle genes from each parent. The blood mutation loses its protective ability when full Sickle Cell is contracted. Sickled blood cells clump together, and pass through blood vessels awkwardly, which can cause physical pain or a sickle crisis.

At the age of five, I was diagnosed with Sickle Cell Anemia. My mum took me to Kings College hospital for regular checkups. That hospital smell, you know the one, antiseptic, would infiltrate my nostrils. The labyrinth of corridors, lifts elevating, A&E overcrowded, patients languishing, lunch trolleys shaking, nurses to-ing and fro-ing, and doctors with a trail of students following in their footsteps— it was fascinating from my eye level.

I know more about hospitals than I do my condition. This is a general theme amongst sickle sufferers, their families, society and even doctors. Throughout my life I’ve struggled to explain my condition to educators and employers when I spontaneously fall ill. There is a lack of awareness, funding, and understanding: therefore, if you live with Sickle Cell, you suffer in silence.

My doctors have made remarkable discoveries by using people like me as a blueprint for their research. Current research suggests, Sickle Cell benefits can be harnessed when the fetus is in the womb to improve the health and care-plan of each patient. However, there is still a lot of work to do before future sickle generations can benefit. Sickle Cell is very underrepresented and does not receive the awareness and funding it deserves. If this is fate, I urge my World Pulse community to help me in my quest to discover more about this complex, and yet flexible disease.