It is the annual celebration of the World Sickle Cell Day and this year, there are many factors people living with the condition have to contend with, chief among is the COVID-19 pandemic. KOLA MUHAMMED, in this report, investigates the state of research on sickle cell, how people living with the anaemia have been coping in the face of the pandemic and ways to stop its spread.
Sickle cell disease popularly known as SS, is a disorder that has been ravaging the African continent and the black race since time immemorial. Due to the manifestations of symptoms in patients of the disease, including high mortality rate during childhood, the old belief of the traditional African society was that it was a spiritual phenomenon.
Delayed growth, weak limbs, poor eyesight, leg ulcer and bouts of pain, jaundice, excessive thirst and vulnerability to physical breakdown are some of the challenges that people suffering from sickle cell anaemia contend with all through a life, pegged by experts at between 40 and 60 years expectancy.
According to findings by Sunday Tribune, nearly 90 per cent of the world’s sickle cell anaemia population lives in three countries. The three countries are Nigeria, India, and the Democratic Republic of Congo, where the disease is believed to affect up to 2 per cent of the countries’ population, and the carrier prevalence rate (sickle cell trait) is as high as 10 to 30 per cent.
For Nigeria, Sunday Tribune’s investigations revealed that no fewer than 150,000 babies are born with sickle cell anaemia, while the childhood mortality rate across the continent is between 50 to 90 per cent.
While sickle cell anaemia still has foothold mainly in African countries and India, innovations and trials continue to abound in a bid to suppress the disease completely and save lives that are rendered helpless due to inherited genetic makeup.
Tradomedical efforts
Speaking with Sunday Tribune on discoveries within the trado-medical research and practice, Seye Olawoyin, a practitioner in the field explained that there are certain herbs which have proven effective for reducing the side effects of sickle cell.
“Over the years, many herbs have been tried and tested in a bid to finding a permanent solution to the problem of sickle cell. As we know, it is not the regular malaria fever which can go away after a few cups of concoction.
“Particularly, what Yoruba call orinata has proven effective in fighting the effects. But, it needs to be the right type of seed. Also, the regular Yoruba chewing stick is another option that is explored.
“You may find some practitioners claiming that they have a permanent cure to sickle cell. However, from what I know and have practised, there is none that has been proven beyond reasonable doubt.
“Some herbs are more effective than the other but ultimately, the anaemia still persists,” Olawoyin added.
Western interventions
From interactions with experts in the fields of haematology and immunology, Sunday Tribune learnt that sickle cell has a tentative cure but advanced research are still ongoing as to unravelling a lasting cure to the disease.
Speaking with Sunday Tribune on the medical advancements that have been made concerning sickle cell, Professor Muheez Durosinmi of the College of Health Sciences, Obafemi Awolowo University, Ile-Ife, Osun State, said that one of the reasons that research on sickle cell has been slow when compared to other diseases is because sickle cell is virtually non-existent in advanced countries.
“As an expert in the field, I can tell you that a lot of efforts have been committed towards bringing the effects of having the sickle cell anaemia to the minimal or even eradicating it. However, we cannot deny that the bulk of the support for research comes from the Western world.
“Sickle cell has been eradicated over there. Therefore, it is not atop their priorities and it would be impossible for them to prioritise a condition that affects other countries, and in this case, developing countries.
“However, despite these circumstances, significant strides have been made in ensuring that sickle cell condition is bearable and livable with,” Professor Durosinmi added.
‘Stem cell transplant is the closest thing to a cure’
Speaking further, Professor Durosinmi said “Though hydroxyurea and blood transfusions have been the mainstays in the prevention of anaemia and vaso-occlusive crises in sickle cell disease, the most advanced research that comes close to a permanent cure for sickle cell anaemia is stem cell transplant, or bone marrow transplant.
“It involves a complete replacement of the bone marrow as the one that produces red blood cells with defective haemoglobin S is replaced with a healthy bone marrow in order to produce normal haemoglobin.
“Fortunately, it is available in Nigeria. I know of one place where bone marrow transplant is available and that is the University of Benin Teaching Hospital.”
The cost of such a stem transplant, according to the sickle cell expert, is around N10 million as of the year 2020, which makes it relatively affordable for a select few in the country.
Speaking further, Professor Durosinmi clarified that if successfully carried out, stem cell transplant does not mean that the defective sickle cell gene cannot be transmitted to one’s offsprings.
“That the operation is successful does not mean that it is completely eradicated in the person’s DNA. The patient’s haemoglobin’s genotype will be changed to AA or AS, depending on the bone marrow donor. However, the DNA does not change; it remains the same SS.
“Hence, such a person cannot afford to marry an ‘S’ genotype carrier.”
‘Selective termination can be risky but not unethical if diagnosed’
Another method of depopulating carriers of sickle cell anaemia is selective termination which may be plainly known as abortion.
This method, as Sunday Tribune found out, involves early diagnosis of the genotype of a foetus and if it is SS, it could be terminated. The process could be repeated until the foetus turns out to either AA or AS.
Speaking on the practice, Professor Durosinmi explained that if it is recommended, then it can be proceeded with.
“Selective termination, as we call it, if medically recommended is not against the law, or religion, especially if it is discovered that it could endanger the life of the woman.
“We advise early diagnosis primarily to help couples prepare adequately for the expected baby,” he said.
Procreating with Sickle Cell Anaemia
With a reported high mortality rate, Sunday Tribune interacted with people who have sickle cell anaemia, but have lived to have their own children.
A mother of two, who wanted to be identified as Olaitan, told Sunday Tribune how she was able to navigate the pains of pregnancy despite her condition.
“By mere physical structure and appearance, you can never know that I am a carrier of sickle cell anaemia. But over time, I have come to understand my condition and how I react under different circumstances.
“This, I think, is the secret of living long and managing pregnancy episodes. However, I must say that I didn’t give birth to my two children naturally.
“I could only bear the pregnancy till the 32nd week after which the delivery was induced. During the first pregnancy, it got to a point that I couldn’t help but fall sick incessantly. Eventually, I was admitted to a hospital and after observations by the doctors, they decided that the delivery had to be induced, even though it was premature.
“The same thing happened during my second pregnancy and thankfully, I now have a boy and a girl. What else would I be looking for after that?” Olaitan queried.
A male respondent who wanted to remain anonymous told Sunday Tribune that living with sickle cell has meant that he does not have the same libido as an average man.
“I have a child now but it has not been easy when it comes to sexual commitment. Because of my condition, I do not have the same sexual drive that my friends say they have. Often times, it is my partner that takes the lead on this. However, since there is understanding, we do not really have problems.
“I must also add that because of my condition, I cannot engage in physical activities for long, else I risk provoking a crisis,” he said.
Coping with COVID-19
With the incursion of the pandemic, several health conditions, including sickle cell anaemia, have been relegated to the back seat in a bid to mitigate the onslaught of coronavirus.
For sickle cell patients, it has been difficult, in the face of COVID-19, getting attention at hospitals and they have had to resort to private doctors whenever they need consultation.
A sickle cell patient and postgraduate student at the University of Ibadan, who wanted to be identified simply as Moyosoreoluwa, told Sunday Tribune that she has her private medical practitioner who attends to her whenever occasion arises.
“Luckily, I have not had cause to use the hospital since the pandemic started. The only time I had cause to do that, I used a private hospital and that time, they were not allowed to treat COVID-19 cases. Other than that, I have my mom, a nurse, who is my private doctor and attends to me all the time.
“My dilemma at the moment is how to adjust to some other persons when outside my base,” the 29-year-old student added.
Corroborating Moyosoreoluwa, another sickle cell carrier who pleaded anonymity also stated that she has a private doctor she consults anytime she needs medical attention.
“Because I am used to how my system works, I don’t really go to hospital except on rare occasions. I have drugs that I use daily and I get new stock at the pharmacy, not the hospital.
“More so, I have a doctor on speed dial that I call if I feel I need to speak with a professional on how I’m feeling. And it is not advisable to go to hospitals like that, because of the risk of exposure and all. You know we can’t afford to have any other condition with what we already go through,” he said.
‘Prevention remains best cure’
Sunday Tribune’s interactions with experts and people alike indicated that the best way to prevent the proliferation of sickle cell anaemia is to avoid the possibility altogether.
A medical doctor, Seye Oyeweso, told Sunday Tribune, “the thought of bringing an innocent soul to this world and subject it to incurable pain should be enough for people to ensure that their genotype combination will not be a potential for trouble.
“The awareness is growing; people with the defective gene must not marry each other. To put it simply, AS must not marry AS; SS can only marry AA and AS must also look for an AA person to marry.”
“Love or religion should not blindfold people to this medical reality. It is the innocent children that will probably spend their entire lives battling acute pain,” he explained.
In the words of Durosinmi, “the government has a lot of work on its hands. Haemotology departments across the country need to be strengthened.”
Not only this, since it is the duty of government to see to the welfare of its people, it must take the initiative to fund more researches and training of personnel in the field of sickle cell disease. It is only when this is done, in concert with other efforts, that patients may begin to lead a more healthy life and fewer people would become patients.
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