According to the Sickle Cell Foundation Nigeria, Sickle Cell Disorder (SCD) is the most common inherited blood disorder in the world. It is associated with severe shortage of blood, severe pain, serious complications such as stroke in children, chronic leg ulcers, degeneration of the hip joint, multiple organ failure, as well as social stigma, emotional and mental trauma and untimely death. Sickle Cell disorder (SCD) affects nearly 100 million people in the world.
Of the 300,000 children born annually worldwide with SCD, more than 70% are in Sub-Saharan Africa – the vast majority in Nigeria, making Nigeria the country with the highest burden of sickle cell disorder in the world!
By virtue of its population, Nigeria stands out as the most sickle cell-endemic country in the world; an estimated 150,000 babies are born every year in Nigeria with SCD and sadly, 50 – 90% do not live to celebrate their 5th birthday, mostly due to ignorance and lack of access to appropriate diagnosis and care.
It is also estimated that over 25% of Nigerians have the sickle cell trait, implying that more than 40 million Nigerians are healthy carriers of the sickle cell gene (Hb AS) – about a quarter of the entire nation’s population – and can therefore transfer the gene to their offspring.
Life Expectancy: The average life expectancy of persons with sickle cell in Nigeria remains very low – less than 20 years; whereas in the US for instance, it is now over 60 years.
These grim statistics are predicted to worsen, should sickle cell disorder not be addressed as the serious public health problem that it is. It is indeed high time SCD is indeed seen as a NATIONAL HEALTH EMERGENCY WHICH MUST BE HANDLED WITH A HIGH SENSE OF URGENCY. Unfortunately, SCD continues to be of low priority for the government and critical stakeholders, who should work in a coherent manner in order to bring SCD to heel.
Sickle Cell Foundation Nigeria posits that we need a targeted approach to addressing the sickle cell problem.
High mortality due to SCD in children under 5 years has been virtually eliminated from North America through policies and legislation that ensure ready access to a number of simple interventions, including newborn screening and prevention of infection through the provision of penicillin prophylaxis and polyvalent pneumococcal vaccination.
We can get there as a country!
The 63rd session of the UN General Assembly in December 2008 adopted a resolution on “recognition of sickle-cell anemia as a public health problem,” and urged Member States and UN organisations to raise awareness of SCD on June 19 of each year. Despite the fact that the UN has called for global efforts “to bring the disease out of the shadows,” relatively little attention has been given to assessing the burden of SCD and how to reduce it in sub-saharan Africa, where about 85% of children with SCD are born.
In 2010, the WHO Regional Office for Africa proposed a SCD strategy officially recognising SCD as an important cause of child mortality in many African countries. Enough is already known to justify investment in public health SCD programmes, such as those already in place for other conditions (e.g., HIV or malaria), for promoting widespread screening, health education, and treatment to prevent or manage SCD.
The Sickle Cell Pyramid of Care ensures that everyone can play a role in bringing adequate intervention to the eco-system. No measure of support is too small to move the needle towards improved narratives. SOURCE (Sickle Cell Foundation Nigeria).
Sarah Ozioma Uzorchukwu, a 25-year old student of the University of Lagos shares her stories of struggles and triumphs with this reporter.
Can you please introduce yourself?
I am Sarah Ozechukwu, a sickle cell patient, a student of masss communication (300 level) from the prestigious University of Lagos. I also model from time to time.
How has living with sickle cell disorder been?
Living with sickle cell anaemia is not easy because it is very expensive to care for. As a sickle cell patient, you have to take your medications appropriately, and they are not that cheap and affordable for all. You need to consume veggies and fruits regularly which a lot of parents cannot afford.
How many of your family members are affected?
Thankfully, I am the only one in my family who is affected. This gives me so much joy as I cannot bear to see any of my siblings going through the pain I go through.
Can you eat anything you like?
That depends on you and your doctor but as for me, I do take almost anything I like though you are advised not to take foods that contain iron as we lose blood a lot and people do say that to regain it you have to take blood tonic but we have been warned against taking blood tonic or any food with iron as it affects us.
So how do you go about the issue of blood?
My mom usually go the natural way, but right now I have a tonic I’m using which doesn’t contain iron and sometimes I get blood transfusion.
Do you feel any signs when you are about to have a crisis?
There are no signs for it. I can remember a time when I was little and I wanted to strike a light on the stove and as I bent to strike the light I wasn’t able to get up again I had an attack from there.
How has being a sickle cell patient affected you as a person?
It has made me an introvert with zero social life aside from my modelling, I hardly go out. I’m the eldest but I look like the youngest (smiles). I like that though… laughs. This made my siblings treat me like a baby.
How has this sickle cell affected your education?
I was schooling in the east. I wanted to go there ever since I was in secondary school though my parents didn’t want me to go far but I fought for it. Then I fell really sick and it was so bad that I had to be brought back to Lagos and had to stay at home for two years.
I also remember when I wanted to write my JUPEB main exams at the University of Lagos, I was really drowsy because of my drugs (prescribed drugs) to the extent of drawing emojis on my papers. I couldn’t write my second-semester exams in year two because I had an attack and was hospitalized for months. I had to defer this semester until the end of my programme as I cannot add it to my current class as it will add to my stress which my doctor advised strongly against.
How supportive have your family been?
My siblings have been very supportive, in fact they are the best! I have always been pampered by my siblings right from the start. They treat me like their baby (laughs). I only have a problem with my parents as they can be over protective sometimes.
Are your parents in support of your modelling career?
At first they were not, they told me that if I go into modelling that I will neglect my education. They were always quick to say no to most of what I wanted, but now they have started changing.
What would you have loved your parents to do differently in managing your health issues?
I would say nothing at all because they have been really supportive and caring. Before now, they would not allow me to get transfused based on their ‘religious’ belief but they have changed their perspective on that now.
My last hospitalization in March took a huge toll on them both physically and financially and I was almost placed on oxygen but God intervened.
Do you use a private hospital or a government-owned hospital?
I was using private hospital before I gained admission into the University. When I got into school, they said they couldn’t accept letters from private hospitals, so I had to change to a government hospital.
Having experienced both private and government hospital, which one do you prefer?
Apart from the stress of long waiting time, I prefer government owned hospital, as there’s always a person on ground to handle any situation. They put a smile on your face there, they are just so amazing.
What would be your advice for the government to live a better life or even the individuals?
Having a child with sickle cell is not a walk in the park at all. As individuals with a child with sickle cell, we must be caring and understand that we are wired differently and need special care. We cannot be exposed too much and must be well fed with a balanced diet. I had a friend who had the same issue as I do and he was not even catered for, his parents made him look like a liability, and he was left to fend for himself. He had to work to support himself at school. This is not good coming from parents who should love and nurture him. He didn’t beg to be born with sickle cell but it is what it is.
The government is trying right now, our treatment is cheaper than others and modern facilities are made available for us. However, they can do better by allowing our treatment to be on the National Insurance Scheme to alleviate the financial burdens on our parents.
Final words
There are certain assumptions people have about sickle cell patients, people assume that once you are in your twenties you should be over the sickle cell. It’s a condition one has to live with for the rest of the person’s life unless you do a bone marrow transplant.
Another assumption I heard is that the sickle cell will not leave you until you give birth. As someone who lives with sickle cell, you don’t need to stress so I don’t get where that is coming from.
This article was written by Alabi Abimbola, M.Sc Student of Mass Communication (2023/2024), University of Lagos, following the training on Disability Reporting facilitated by Blessing Oladunjoye, Publisher of BONews Service.