Millions of Nigerians struggle to live because of sickle cell. The country has one of the highest rates of sickle cell disease globally, with about 40% of the population carrying the trait. Recent local advancements, including the first successful bone marrow transplants, offer hope for more accessible treatments in the future, while experts advocate for government support to make cures more affordable for average Nigerians.

For 20-year-old Florence, life has never been rosy and pain-free. Nineteen out of the twenty years she has spent on earth have been the worst anybody could not wish for. When others use cakes to mark their birth anniversary, what Florence gets is a bucket load of pain, which, with each passing year, becomes more vivid, becoming an inescapable fate unless she gives up on living.

If it were by prayer, the majority of the 4-6 million Nigerians battling sickle cell disease would have been cured by now. This figure puts Nigeria among the countries with the highest prevalence rates globally.

Speaking with TheRadar, the Nigerian undergraduate recounted how she got to know about her condition.

“I've always been different ever since I became aware of myself. I'm always in pain and I get tired easily to the point of fainting. My yellowish eye made me hideous. When I was around 9, I looked hideous. I know I did.

"My family was no better because they all thought I was a witch. I knew that was an act of ignorance. I was cared for, but we have never imagined that it could be sickle cell disease. Because nothing like that had ever happened in my family.

“I remember there was a time when I was around 7 when I was taken to Father's town to be accused of witchcraft. I was stripped naked in a river and beaten mercilessly till I almost fainted. Yet, the sickness persisted until I was transfused. I took different concoctions, and yet I remained sickly. I was always in pain constantly.

"The ‘secret’ was revealed when I got admitted into the university in 2022. There, I went for the school's medical screening and I got the shock of my life. I disagreed, and I thought it could never be.

“I remember I had a copy of my blood test result I had when I was younger and AA was written as my genotype. How on earth did it change to SC? I refused to believe it," Florence added.

Speaking further, she explained how an aunt and her husband were helpful in helping to understand the health condition.

“But I remembered when I was living with my aunty; it was her husband that first told me in my life that I could never be AA with my bout of sickness and pain. He was the second person after my aunty, a nurse.

“After the medical screening, I called my mum and elder sister and them. They were equally shocked, and I had to go for another test when I got home, it was confirmed, and since then, the pain has worsened except this year. I've had no bouts of pain and have not fallen sick.

"My mum has been so supportive ever since we discovered it. I told my father, and he blatantly told me to my face that he knew nothing of it.

“He said, ‘We don't fall sick in my family, I know nothing of it.’”

Like Florence, like millions of other Nigerians

Florence’s condition is not an isolated one, as millions of other Nigerians also battle this seemingly incurable ailment. About 150,000 babies are said to be born annually with the disease, while about 40% of Nigerians carry the sickle cell trait in their blood with the risk of passing it to their offspring, according to 2024 research.

Speaking on living with sickle cell, 32-year-old Deborah says that even though the pain never goes away, due to age and decades of living with herself, she now understands her body better and her physical limits.

“I’m 32 and married, to the glory of God. But I must say that it’s not been easy to live with sickle cell. Maybe an edge I have that many may not have is that my mum is a nurse. So, I have a ready first-aid doctor at home anytime crisis occurs.

“And now, with time, I’ve understood my body and its limits. So, I don’t fall into crisis as often as before. I know to manage myself better. However, the rainy season stresses me because of the attendant cold.”

Although Florence and Deborah have crossed the 20-year age barrier, the childhood mortality rate across the continent is estimated to be between 50 to 90 per cent, suggesting that many die in infanthood due to the disease.

What it feels like to be vulnerable

Florence adds, “Few people pity you and a lot of them think you're going to die soon. Somebody literally told my mum to make sure I get married before 22. Funny.

There was a time I was sick and was almost raped because the person thought I was vulnerable. Having a good family helps. But money is always the problem."

Revisiting the biology of sickle cell disease

Sickle cell disease (SCD) is a hereditary and genetic disorder that affects the production of haemoglobin, a protein in red blood cells that carries oxygen to the body's tissues. This disease causes the blood cells to misshapen like a sickle or crescent and break down prematurely.

It leads to several complications, such as anaemia, painful episodes, jaundice, poor eyesight, weak limbs, leg ulcer, excessive thirst, vulnerability to physical breakdown and delayed growth and development.

Sickle cell disease is caused by a mutation in the HBB gene, which is the beta-globin, a subunit of haemoglobin. This mutation leads to the production of abnormal haemoglobin, known as sickle haemoglobin (Hbs), leading to a lot of complications. The disease is inherited from both parents, who are usually carriers of the sickle cell trait (SCT).

Ebola, COVID have had cures, vaccines; why is sickle cell different?

TheRadar’s interactions with medical experts in the field revealed that a primary reason for the slow research and cure emergence is that sickle cell disease is virtually non-existent in advanced countries.

A sickle cell expert, Professor Muheez Durosinmi of the College of Health Sciences, Obafemi Awolowo University, Ile-Ife, was quoted by the Nigerian Tribune saying that:

“As an expert in the field, I can tell you that a lot of efforts have been committed to bringing the effects of having sickle cell anaemia to a minimum 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 a top priority for them, and it would be impossible for them to prioritise a condition that affects other countries, and in this case, developing countries,” the professor added.

Latest technology, research around sickle cell: How close are we to a cure?

Although Third World countries bear the brunt of sickle cell disease, this has not stopped research on getting a cure for sickle cell disease.

Stem cell transplantation and umbilical cord blood transplant are some of the products of advanced research that could significantly reduce the impact of sickle cell in a carrier’s body. The overall aim is to replace the patient's bone marrow with healthy stem cells.

Experts have also mentioned Gene Therapy, which aims to correct the faulty gene in the patient or add a healthy copy of the gene.

Speaking with TheRadar, a medical doctor whose speciality is sickle cell disease, Dr Ayo Olanipekun of the Federal Teaching Hospital, Ido Ekiti, said that recent advancements in medical research have brought about cures for sickle cell disease.

"Bone marrow transplant and Gene Therapies have been proven to cure sickle cell disease. However, these cure options are not available to everyone due to their cost. They are very expensive and not affordable for an average Nigerian.

"I strongly believe there will be a permanent cure that will be accessible to all sickle cell warriors irrespective of their socioeconomic status, age, ethnicity, religion, and education. It might take time but it's very possible. At least, there has been a lot of improvement in medical care over the years," the medical practitioner stated.

Doctor Olanipekun added that the average Nigerian will have to deal with treating and managing the symptoms and complications of the disease and that unless the government subsidises the cost, accessibility is not certain for them.

"I feel to a cheaper cure, we are not any where close to getting it. We're not close to a cheaper cure for average Nigerians. An expensive research is ongoing and very soon something relatively cheap would be out," she added.

Hope at last

In what appears to be a hope rekindler for sickle cell sufferers, on September 22, 2024, the Sickle Cell Foundation Nigeria (SCFN), in conjunction with Lagos University Teaching Hospital (LUTH), offered bone marrow transplant to two patients under its transplant programme.

According to the two parties, they are carrying out the bone marrow transplant programme on the first set of patients to ensure that Nigerians can access a high-quality, safe bone marrow transplant that meets international standards for the cure of sickle cell disease.

According to the statement they put out, “The bone marrow transplant using a donor from a family member is an established cure for this disease, first used more than 30 years ago.”

It also stated that the bone marrow transplant is a complex procedure requiring a multidisciplinary team approach and involves treatment and close follow-up for approximately 12 months.

Corroborating the words of Olanipekun, the statement admitted that the complexity and costs have severely limited those who can obtain this treatment, and most have sought this treatment outside Nigeria, which causes severe hardship for patients and families, only to come home with no local expertise for follow-up.

Regardless, this proves to be a step in the right direction. Sickle cell warriors now have more reasons to stay stronger, as they can now get treatment in Nigeria. The hope is that the cost will either come down with time or the government and non-governmental initiatives subsidise it.

Mpox outbreak could make entire African continent declare public health emergency

Meanwhile, TheRadar previously reported that the African continent could declare a Public Health Emergency of Continental Security (PHECS) as the Mpox (Monkeypox) outbreak continues to spread across many countries.

The Director General of the Africa Centre for Disease Control (CDC), Jean Kaseya, said this during a webinar on August 8 on the Mpox outbreak situation in the Democratic Republic of Congo and other African countries.

Mpox is a viral disease caused by the monkeypox virus. It is similar to smallpox, though generally less severe and it is characterised by symptoms such as fever, rash, and swollen lymph nodes.

Lifestyle/Health

Living with Sickle Cell in Nigeria: Stories of struggle, strength, and quest for a cure

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