Black Health Matters Too! Sickle Cell: The Silent Disorder
I was meant to have 5 siblings in total; however my eldest sister died when she was only a baby and my other brother died when he was 7, both from sickle cell disease. Now there are only 4 of us: my two older brothers and my sister. One of my brothers, Matthew, has been surviving with sickle cell ever since he was born: he is in his late 40s now and it has been difficult to watch him experience the enduring pain that goes along with it.
Now my niece, my sister’s 10 year-old daughter, has sickle cell also. They are not the only black people who I have met who have it, so I often wonder - why it is not talked about more widely in the media? Is it because people do not know about it? Or, is it due to the more disturbing realisation that Black health DOES NOT matter? It’s possibly a combination of both.
So, what is sickle cell exactly? Sickle cell is a disease that is genetic and is NOT contagious: you cannot contract it like you would a cold. There are different types of sickle cell disease; my brother has Sickle Cell Anaemia (SS) and my niece has Sickle Cell Disease (SC).
Sickle cell is detected during pregnancy (when screening is carried out), or after birth. However, you can have blood test at any age. If you do not develop sickle cell, there is a strong likely-hood that you will have a sickle cell trait, like myself. This means that if I have a baby with another person who has a trait, there is a 1 in 4 chance that each child will develop sickle cell, as it is caused by both parents having a sickle cell trait.
Research estimates that there are around 15,000 black people in the UK who experience sickle cell. Sickle cell is caused by irregularly shaped red blood cells which have a shorter life-span than other red blood cells. Ordinary red blood cells are shaped like a doughnut, whereas sickle cell blood cells are shaped like a moon crescent - like an S, hence the name ‘Sickle Cell’. These irregularly shaped red blood cells can become trapped in blood cells which cause heightened risks of infections, lower life expectancy, cause strokes, lung problems, anaemia, and severe pain called ‘crises’ which occurs when the red blood cells become trapped. Hip problems are also a side effect of the disease; people often have to weigh up their current quality of life versus enduring multiple hip operations in their lifetime as these operations only last 10-15 years! Sickle cell is something that is common in people of a black and ethnic minority background; however ANY race or ethnicity could inherit sickle cell since the gene is found in all ethnic groups. It is unclear why it is more prevalent in African and Caribbean societies, and it is important we keep asking ourselves what can we do to shine a light on this topic? What can we do as a society to make a difference? If nothing changes then sickle cell survivors will continue to feel like they have to battle their illnesses alone, silent, in a turmoil of pain, living with their voices being unnoticed, a reduced life expectancy, and no cure.
I spoke with both my niece and my brother Matthew to gather their views on the subject. Here are two experiences from two different generations.
My niece’s experience
‘Due to having sickle cell I cannot do a lot of sport if I haven’t been very well. I like gymnastics and swimming, however, as the water will be cold, this can spark more pain. I experience side effects from the daily medication that I have to take, such as tiredness, sickness (nausea and vomiting), dizziness, and stomach aches.
If I miss school due to my illness than the teachers usually offer me extra help in the subjects that I have missed out on. However, if there are supply teachers in the school, when I experience pain it becomes problematic as I am sometimes unable to explain sickle cell in an easy-to-understand way. I feel that they do not understand and the supply teacher will say statements such as “ I don’t believe you, you’re fine, go and sit down”.
This makes me feel worse as I cannot get my medication, and it is hard to understand that they do not WANT to understand. This leaves me feeling disappointed.
I am lucky as I do not have the worst pain, though it impacts upon my life, however not as much as other people.’
Matthew’s experience
‘I have experienced many dark days due to this illness, and for a long time I have long suffered in silence when I have been in pain. I did not think people would really be able to understand. It is still hard for me to express when I am in pain sometimes. I have for a long time thought “it’s always my fault,” and that “I need to do the best I can with the time that I have”. When the crises comes, I am not sure how long it will last, and when it goes I am always wondering when it will come back. There is always some trigger, and when I do not have the full blown crises there is always on-going pain in the background that never leaves.
Sickle cell is now recognised as a disability, however, for years it wasn’t. I recall running for the bus one time - it was only 50 yards - and this triggered a severe pain episode. I sat in the accessible seats at the front of the bus, but there was soon an older lady who got on and I couldn’t move. There was an expectation that I should get up, but when I moved ever so slightly the pain was extreme. I could feel every imperfection in the road, and it vibrates through the body which makes the pain even harder to bear. I have found going to the hospital challenging.
There is a stereotype that black people come into the hospital to get a high. When I lived in Cardiff myself, a friend worked tirelessly for 7 years on a project called ‘Friends of Sickle of Cell in Cardiff’. The project did a lot change the image of sickle cell-experienced people. We implemented a card system so that now, if someone goes in to hospital, the person shows the card and they can be admitted and given medication within 20 minutes. This is better than what was happening previously; people were turning up to hospital in crises and having to wait 40 minutes or longer whilst being asked the same information (like name and dob) by various different medical staff – all before medical intervention happened. So not only do those who experience sickle cell have to deal with this debilitating illness, they experience institutionalised racism by the health system also. I think that there is not a lot of funding invested in sickle cell research compared to that invested in Leukaemia. Even though there are more people who experience sickle cell, it does not appear that it matters as much. I believe the future could be different if people were more aware of the impacts of sickle cell and the interlink with racism.”
So what can we do to support people who experience sickle cell?
Currently, the only cure is a bone marrow transplant. This is an invasive procedure and requires a suitable match; it is only done when the person is a child - and there is still a risk that the transplant can be rejected by the body also. There is also a concern that, even though we know in the black community that sick cell exists, we are not donating enough blood to help tackle the situation. Startling statistics have found that only 1.5% of UK blood donors are black. The implications for this are massive, as some people with sickle cell and other blood related illness rely upon regular blood transfusions every 3- 4 weeks in order to survive and lead a normal life. Therefore, donating blood is crucial. There are many local radio stations which encourage and promote the donating of blood among the black community, but the uptake appears to be minimal. I do wonder that, if there was more national media coverage about this, would things change? Do we need to challenge the stigma of giving blood and see it not as something to be feared, but as a life giving resource?
I asked both my brother and niece: what they think is needed to change perceptions in society and provoke different actions?
They both said that raising awareness is key. For example, if you come across someone with sickle cell, be supportive and get to know them as a person. Separate them from their illness as they are, fundamentally NOT their illness: they are a multifaceted person. Ask if there is anything you can do to help?
Secondly, a new future for sickle cell survivors is only possible if black people are on the same playing field: until we get black doctors to do more research then the situation won’t change.
Personally I believe that more black blood donors are needed, and that we need to keep the conversation going. Black Health DOES MATTER: it is important that we are valued, and we need society to recognise this and come together to find solutions to generate new possibilities for a brighter future.
Further resources and information on sickle cell can be found below:
https://www.sicklecellsociety.org/
https://www.nhs.uk/conditions/sickle-cell-disease/treatment/
Written by Rebecca Olayinka
Rebecca is from London and has lived in Bristol for 14 years. Rebecca attended UWE and now works as Senior Practitioner (Social Worker) in Bristol. Rebecca loves poetry and is currently working on her first manuscript.