The Silence Of Sickle Cell

Words: Joseph Ntege

15,000 people in the UK suffer from Sickle cell anaemia, including myself. Due to a lack of Sickle Cell awareness, we are made to deal with physical and mental exhaustion on a day to day whilst keeping up with the world around us. But why does this disease that seems to mostly affect the black community get so little attention?

The absence of systematic and interpersonal awareness almost becomes a silencer for Sickle Cell sufferers – not wanting to be treated differently, but knowing this disease inherently makes you different from birth. You have no choice but to accept this reality when you are spending your life in and out of hospital. I can honestly say that a lot of us just soldier on, knowing that very few may understand our struggle to be a legitimate one. This creates an expectation of us to perform, work and live like the rest of the world does. Opening up about Sickle Cell Anaemia mostly begins and ends at the introduction stage - because we rarely feel comfortable opening up when society just doesn’t know enough about this struggle.

What I’ve come to realise as a Sickle Cell sufferer and a student, is just how little social institutions know about dealing with Sickle Cell. Most cohorts do not register Sickle Cell Disease (SCD) as a legitimate disability. In most cases, funding boards such as Student Finance England fail to recognise Sickle Cell even as a disorder deemed fit for disability allowance funding – even though Sickle Cell sufferers miss countless days of university, school and work due to SCD.

The healthcare system which should both care about SCD and have a knowledgeable reaction also falls short when dealing with SCD. There seems to be an embarrassingly low amount of funding and research surrounding SCD, compared to other genetic disorders such as Cystic Fibrosis. Although Sickle Cell is the most common genetic disorder in the world, most sickle cell patients struggle to access even the most basic forms of healthcare and many are left living off painkillers and antibiotics. This lack of progress seems to stem from the fact that Sickle Cell is known as a “black disease” as it affects mostly Afro-Caribbean’s, who are often starved of basic human rights in the UK, and so Sickle cell research for a cure has been historically low on funds.

In July 2017, the FDA approved its first drug to treat the symptoms of SCD in two decades. Researchers have since claimed that this drug, Endari, has very little benefits and has since been put aside by many hospitals and GPs. Our government needs to do more to accommodate Sickle cell sufferers and has failed to even scratch the surface of help.

Even once you get past the lack of research and funding for SCD, you have to then confront the discrimination against sickle cell patients. Ultimately, we have to deal with the same underfunded healthcare system that has led to Black women being 5 times more likely to die from childbirth than any other group and a wildly disproportionate amount of black people dying from COVID-19 related illnesses.

““What stands out for me during every one of my sickle cell crises (episodes of pain) is this need to prove my suffering to the hospital workers. Historically, scientists have suggested that black people can endure more pain than others. “”

This idea has trickled down through generations and is still at the core of the healthcare system today - medical texts have been found to teach medical students, nurses and doctors the differences in pain endurance amongst different ethnic groups, with no scientific empirical evidence to support these claims. “On a scale of 1 to 10, how bad is the pain?” “Are you sure it hurts there?” they ask suspiciously as I struggle to breathe, move and speak whilst fighting my body’s urge to just pass out. Every trip to the hospital is met with a deep interrogation by the hospital staff who work for a racist healthcare institution that systematically oppresses black people. Only on a few occasions have I suffered a painful episode and been greeted by doctors, nurses, ambulance workers who have any holistic understanding of Sickle Cell Anaemia.

Mobb Deep rapper Prodigy’s untimely death after battling with sickle cell also indicates the holes in the healthcare system that are driven by centuries of neglecting black people. Even amongst those of a higher socio-economic class, healthcare’s systematic oppression of black people is still prevalent. Scientists have known about sickle cell for over half a century and still, little progress has been made.

Prodigy - Rapper & member of American Hip-Hop duo Mobb Deep

The painful truth of living with SCD isn’t just the institutional racism in the health and education systems but knowing that this lifestyle greatly affects my own mental health and how I am perceived by my family and peers. Growing up in inner-city London playing football with friends but not being able to run for as long or do any extraneous activities, my dream of being a footballer was shattered as a boy with my first visit to the GP. Sickle Cell means “you can’t do any sports or spend all your time at the gym but it’s fine, you’re smart, you’ll read books and get a comfortable office job”. With that revelation alone, a lot of what it means to be a man in this society is already stripped away from you.

““How do I go about navigating people’s expectations, when I know there is something holding me back, but I haven’t been given a platform to articulate my struggle?””

A genetic disorder isn’t something I have control of; my diet or lifestyle didn’t put me in this position. Out of the 5 children my parents have, sickle cell chose me. My friends and family, empathetic about my condition, have a lot of support to give but only so much can be done when failing systems mean that knowledge of sickle cell is scarce. To go through every excruciatingly painful episode of a sickle cell crisis knowing any could be your last; there is an element of withdrawal and you ask yourself ‘what is the point’? You attempt to get past the anaemia and various infections by working hard and becoming even more exhausted – only to realise you’re no longer working hard to keep up but because you know you could be running on borrowed time. Sickle Cell hearts beat faster and stronger, but for a shorter amount of time.

The large majority of the black community fail to give blood; less than 5% of blood donors are black even though disorder seems to mostly affect the black community. Rare blood type subgroups such as Ro are more common amongst people of black heritage and with 1 in 4,500 people suffering from sickle cell in the UK, the demand for black donors is higher, as regular blood transfusions help to ease the effects of sickle cell exponentially. Given these numbers, just 40,000 black blood donors will decrease the effects of Sickle Cell within the black community massively. Blood donation is completely safe, and many could find that their blood matches positively with their family or friend who suffers from Sickle Cell.

Research has been able to identify the physical effects of Sickle cell, but we still fail to consider the psychological effects of this disorder. Many, including myself, are still learning how to deal with the Sickle Cell existence. Substantial action and conversations surrounding the systematic racism, silencing and overall neglect of sickle cell sufferers is needed.

You can follow the Sickle Cell Society UK here.

Words: Joseph Ntege