Sickle cell disease comes with a lot of complications and pain, and the desire to be free from the genetic illness has led many sickle cell patients, referred to as warriors, to seek a cure, leaving them at the mercy of fake and unproven healers JANET OGUNDEPO writes
The year was 2018, Joshua Adekola, an undergraduate at the University of Ilorin, Kwara State, now in his 20s, was writhing in pain and trembling. Although the pain he felt was not new to him, it was one he prayed to never experience again. But time after time, the situation persisted.
The cause of his pain was a genetic condition that caused his blood cells to be shaped abnormally, taking the form of a sickle, preventing the proper flow of blood.
A relative troubled about his frequent pain and sickness told his mother of a “doctor” stationed in an unnamed hospital touted as one who could proffer a cure.
A visit to the doctor, Adekola said, revealed a man garbed in a doctor’s robe, armed with a medical note and had the aura of a doctor.
The doctor, Adekola stated, began by telling them of the special herb he had prepared, adding that patients who had used them had been cured.
He continued, “I asked to see the file or medical history of the cured patients but he avoided the answers and continued with the testimonials. After the discussions, he took us to where he stored the herbs in different kegs. The strongest one was N35,000. The added condition was to stop all orthodox drugs while using the drugs.”
After two weeks of toiling, including borrowing, to raise the money, the drug, touted as a permanent cure, was procured and he commenced usage swiftly, hoping for a speedy cure.
About 25 days later, Adekola had a crisis; his situation did not change. Seeing no change, he said he secretly began taking his conventional drugs and returned to a proper hospital for treatment.
Instead of being treated, the herbs caused an infection and increased the frequency of his crisis.
He added, “It was later on she (his mother) discovered that she had been defrauded. When they went back to trace the ‘doctor’ he was nowhere to be found.”
From being attended to at the basement of a hospital to sipping concoctions and soups prepared in a clay pot, cooked with firewood, and to be sipped with the aid of a bone, Adekola witnessed them all.
In addition, he was made to take several herbs, and abstain from taking carbohydrates, chicken, or turkey, among others. In spite of these, a cure remained elusive.
“Every time I took these herbs, I would always fall ill, and all these were done amid financial troubles and wastage of money,” he said.
Adekola stated that in the process of encountering several herbalists, self-acclaimed doctors, and religious folks, he lost huge sums of money, in addition to dashed hopes, infections, and emotional upheavals.
He stated that since he stopped the search for a cure and “the more I attend to myself, the less I fall sick. The normal crisis has reduced to two or three times in a year.”
While decrying the deceit embedded in such unverified solutions, he asked people of his ilk to embrace proper treatment to avoid falling into the hands of fraudsters.
Myths about SCD
Sickle cell hemoglobinopathy is also known as sickle-cell disease or sickle-cell anaemia or sometimes drepanocytosis. SCD warriors were in the olden days mistaken as abiku, ogbanje and sankara miji by the Yoruba, Ibo and Hausa-Fulbe tribes respectively.
A professor of Medical Biochemistry with a research focus on Sickle Cell Disease Management Phytomedicine at the University of Port Harcourt, Rivers State, Augustine Uwakwe, defined SCD as a hereditary blood disorder, characterised by an abnormality in the haemoglobin molecule of erythrocytes.
This resulted in a point mutation that caused the cells to assume an abnormal, rigid, sickle-like shape under conditions of hypoxia.
SCD is associated with several acute and chronic health problems, such as severe infections, excruciating pain, commonly known as sickle-cell crisis, stroke and sometimes death.
Meanwhile, the carriers told Sunday PUNCH that apart from adopting the lifestyle prescribed by medical experts, certain drugs administered by their doctors also help them in managing the condition.
Also, reports indicated that bone marrow transplant was the only known cure for SCD, however, it is said to be a difficult option because of the difficulty in finding a matching human leukocyte antigen.
Nigeria is said to account for 33 per cent of the global burden of SCD. 100,000 to 300,000 newborns live with SCD, a 2022 report by the Pan-African Medical Journal stated. This put financial, psychological and emotional burdens on the patients and family members.
Dashed hopes
A warrior and founder of Daisy Sickle Cell Foundation, Gift Uwalaka, never thought that she would be heavily cheated of her hard-earned money.
She schooled and worked part-time to fend for herself. Although, Uwalaka said even though she knew that the only cure for SCD was a transplant, she was constrained to seek another possible cure.
She said, “Sometimes, some of us are not just looking for the cure to sickle cell as a whole. Sometimes, we are looking for a permanent cure to some of the complications because the complications are what make sickle cell deadly.”
Leg ulcer, a wound on the leg that expands and sometimes eats deep into the bone in the leg, is caused by poor blood circulation in the leg.
While seeking a cure for the wound that had caused stigma and pain, Uwalaka, said she sought options after engaging in orthodox treatment that failed to work.
“When the leg ulcer started, one of the episodes lasted for about six years. During that time people were telling me of places they knew I could be cured. They believed that if SCD was cured, the complications would go away,” she stated.
Directed by a signboard
Uwalaka said her attention was called to a signpost somewhere in Ijebu-Ode, with the words, “We cure sickle” by a friend. She stated that she refused to acknowledge such a centre knowing that such claims were false.
But when the wound continued to eat deep, coupled with the terrible pain and discomfort of always wearing a bandage, she gave the centre a trial.
Uwalaka stated that she was referred to a doctor called ‘Chinese doctor’ with claims of curing all kinds of diseases, including sickle cell.
She stated that the so-called Chinese doctor was a Nigerian who had his medical training in China but returned to practice in Nigeria.
In her first visit to the acclaimed sickle cell healer, Uwalaka stated that she got reassurance of being cured of SCD and the leg ulcer and that cure would cost N200,000.
She said the ‘doctor’ told her beforehand that the procedure would be painful and would be done for a month.
“He told us the things to get, informing us that he would be coming to the house to treat the wound,” she recalled. “We first paid N50,000 for him to begin the treatment because he assured us that there would be changes within one week of treatment. He told us he was going to apply a powder that would dry up the wound but it was going to sting me. When he came, he asked for hot water and new blades.”
Describing the process as torturous, her narration of the process was heartbreaking.
Uwalaka said the ‘doctor’ would pour hot water on the surface of the wound, which would then turn white, then he would scrape the already raw surface with a blade.
“I would be screaming hell! But at the end of the day, there was no improvement. His excuse was that we had not paid ‘very well’ and that the ‘main thing’ he wanted to put, we have not paid for it. So we paid another N50,000, which brought the total sum to N100,000,” she said, pitiably.
After payments were made, a curry-looking powder was the “thing” he administered next.
In vivid and painful terms, she described the next experience, “He told me that this powder would sting me and that whenever he would be coming to administer it on the wound, a fan must be turned on. If there was power outage, a generator must be turned on.
“But it was all fake and lies. I had to stop it because I was not seeing any improvement and I could no longer pay that amount. When we stopped paying, he stopped coming and that was it.”
In all, Chinese doctor only attended to Uwalaka about six times within two weeks. After he stopped coming, she said his whereabouts were unknown while the wound remained, prompting another barrage of advice and source for a cure.
“Someone then said there was a place we could go to,” she continued. “I went to several places to the extent that I didn’t know when I entered the shrine of a traditional worshipper. I was so scared and I couldn’t go ahead with whatever they were asking for.
“At the end of the day, I started treating it myself because I could not find a solution anywhere. I experimented with several medications and I got it right eventually.”
The situation left her drained financially, while she battled dashed hope, emotional pain, stigma and a near fruitless search for a cure.
After the encounter with Chinese doctor, Uwalaka was further told that the disease could disappear in warriors if they took a certain concoction cooked in an earthenware pot that must not be placed on the ground.
This concoction, she was told, would be sipped using a bone and taken for a week. During the treatment, she was told not to eat fish, meat and crayfish, among other bony substances.
“How would I stop eating these things when I need those nutrients?” she queried.
After several trials, Uwalaka said her leg ulcer had healed and that she had become an advocate for other sickle cell carriers.
She added, “I feel if they claim that they have a cure for sickle cell, the effect should be seen in no distant time. If they are not bold enough to come out to the public or present their discovery to the relevant agencies, I think they should stop deceiving and duping people.
“Nigeria is already hard, being deceived despite battling serious pain is a tragedy. Many of the people living with sickle cell in Nigeria are from low-income homes, and they mostly fall prey to these people.”
She urged relatives of SCD carriers to focus on care and encouragement instead of looking for a cure from fraudsters. She noted that she was yet to see a patient who had been cured of SCD by the self-advertised ‘healers’.
Scammed from childhood
The love and concern on his mother’s face, whenever he was in crisis was part of the memories etched in a sickle cell warrior in his 40s, Mr Owolabi Abass.
While seeking solutions to his health challenge, Abass recalled taking lots of herbs and having several incisions on his palms and feet. Yet, he lives with the condition till date.
Disgruntled and tired of the failed solutions, Abass, who complained of waist pain during a conversation with our correspondent, said he had learnt to accept his fate, having lost money while searching for a cure.
Speaking in Yoruba, he stated, “Most of them are thieves. If the medications of native doctors worked, I wouldn’t be an SS carrier today. At a young age, my mother took me to several places. There was no place we didn’t visit and no kind of medication I wasn’t given.
“I ate and drank several concoctions to the extent that my liver began to swell and my eyes turned green. I have incisions on my knees and ankles and with all this, no cure.
“In 1994, I almost lost my life. I had to go to the University College Hospital, Ibadan, Oyo State, where I was treated and God took the glory. Before then, my stomach was swollen but after the treatment it came down.”
He said his experience taught him there was no solution in the herbal drugs and traditional solutions people advertised.
He pointed out that his mother’s desperation was exploited and she lost money. Abbas stated that since 1981, his parents had lost huge sums of money to ‘healers’ in addition to clothes, food items and animals they were asked to buy for different purposes.
He warned other warriors not to be deceived, saying use of prescribed medications, supplements and their lifestyle were crucial to their well-being.
He dared practitioners with claims of cure to take them to medical research centres where they could be tested. He also admonished donors to help carriers with the purchase of drugs and the provision of jobs.
N750,000 for cure
A search on Facebook showed several acclaimed practitioners with a cure for sickle cell.
Some of them boldly stated that with their cure, SS carriers would have their genotype changed from SS to AA.
Our correspondent, acting as a desperate mother seeking a cure for her 14-year-old child currently in the throes of pain, called two of the numbers advertised on the platform.
The first person called was with the name Oyibo Matthew. Matthew had posted in June a 30-day free treatment for SCD carriers.
He called the treatment life-saving therapy but that this would involve a one-week admission at his centre in Ijebu-Ode and an upfront fee of N750,000.
Describing the treatment process, Mathew said, “The child will spend one week on admission and after that begin the treatment. What the safe-life therapy does is to take care of the crisis, delayed growth and anaemia, yellow eyeballs and swollen parts of the body as well as prevent them from having a stroke.”
He, however, admitted that the medications would not change the genotype of the patient but prevent it from “releasing sickle cell.”
He clarified that since the treatment was not a bone marrow transplant, the patient’s genotype remained SS.
The 10-month treatment consisted of the first one-week admission followed up with vaccines and drugs for three-month and centre visits every three months.
Despite pleas for payment in instalments and reduction in the fee, he insisted the fee was not negotiable.
“We don’t do that, we pay at once. People that did it are there and can confirm to you,” he stated.
When asked about the type of drugs, he stated that the medications were not herbal but conventional drugs.
When asked about the name of some of the drugs, the call ended abruptly.
Mathew would then call the next morning saying his number, being a hotline, received many calls as the reason why the call ended.
He clarified that the therapy was a combination of drugs and not just a drug. The call dropped abruptly again.
From SS to AA
Still presenting herself as a mother with a 14-year-old SS child, this correspondent proceeded to call another number on Facebook with claims of turning SS to AA.
Adeola Lukemon was the handle that had posted the number and after a call to the listed number, he revealed that he was Adeola Lukemon.
He restated that their medication was a genetically changing drug, the same as what was stated on Facebook.
With a resounding and bold voice, arguably glad to have got a customer, Lukemon gave reassuring words to our correspondent.
Lukemon stated that he was based in Akure and directed this correspondent to “Daddy” who was in charge.
When asked about the need for the referral, he said, “I am one of the sons of the doctor. I will give you our daddy’s number directly because when you begin to use the drugs, it is a herbal drug that is NAFDAC registered and some people have used it and have testimony.
“We have offices in many places and it is called Rufus Herbal. It is not a chemist and that is the reason you will be directed to our office so you can get the drugs there. When you are using the drugs, if there is any reaction, you will be able to call the doctor, Daddy, directly. Our headquarters is in Akure, Ondo State.”
One of the warriors our correspondent spoke with stated that one of the herbal homes they visited was called Rufus Herbal.
When asked about the type of medications that would be given, Lukemon stated, “We have anti-crisis, blood tonic and a drug produced by Daddy. I can guarantee that when you begin to use the drugs you will see changes.”
The total amount to be paid was not clear. Lukemon stated that the fee depended on the drugs bought. But some standing rules must be followed.
He stated that the child, when using the medication, must not eat foods like okra or bread and must not take carbonated drinks.
The least amount to be taken to the clinic to “buy some drugs” was pegged at N20,000.
No cure after investing funds
A Mass Communication lecturer and founder, Oladipupo Sickle Cell Foundation, Mr ‘Dotun Oladipupo, had had several encounters with acclaimed healers of SCD but “they never worked for me.”
He noted that although he had spent about N1m in such settings, he remained a carrier.
He stated that their aggressive advertisement was a ploy to lure unsuspecting and desperate warriors.
Oladipupo, however, noted that there the tested alternative medicines that reduced the frequency of crisis, complications and hospitalisation with SCD carriers were a ploy herbal doctors used to claim they had a cure.
He stated, “Due to the unhygienic ways of producing the concoctions, we have seen cases where people get infections. Some of these substances also do not have dosages or scientific measurements like in orthodox medicine and as a result, it has caused some complications and several hospital visits for the SCD warriors.
“The unsuspecting public, looking at the resources and distresses their loved ones face, would want to look for a one-off solution regardless of the amount. This is what the herbal practitioners use as an advantage.”
Oladipupo added that in his interactions with several practitioners advertising cure for SCD, they only gave interventions that reduced the complications of the disease.
He stated that research into alternative medicine needed to be carried out extensively to look into such cures.
“I think the government look into the regulation of all these claims that we have in our society. You see a lot of people laying claim to the fact that they cure SCD, using that to scam and extort desperate parents and carriers of their money.”
Unsure claims
Findings by our correspondent about the veracity of the claims by other traditional practitioners revealed that there was no generally prescribed cure.
However, not all the claimers contacted made use of herbal drugs. The drugs and modes were also shrouded in secrecy.
In a conversation with our correspondent, the National Auditor II, National Association of Nigerian Traditional Medicine, identified as Dokita Ajulo Ademola, stated that although he had not treated sickle cell carriers, 90 per cent of his colleagues had treated people with the disease.
He said, “With my level of experience, I have never for once engaged someone with sickle cell but if you are to engage 100 people in this profession, at least 90 per cent of them will tell you that they have treated people with sickle cell.
“Although the truth remains that we still have some of us that have been able to cure people with sickle cell before, I have never for once engaged someone with sickle cell.”
When asked further questions on whether as an association there was a shared knowledge and agreed practice about the treatment, Ademola asked our correspondent to reach out to him on WhatsApp and ended the call. He also did not respond to the messages sent to him on the platform.
‘Claims for cure laughable’
Orthodox medical practitioners have described as laughable claims that herbal medicines could change a SS genotype to AA.
Uwakwe stated that the claims of herbs to cure sickle cell diseases were laughable.
He added that there were no proven scientific works that showed that herbs could cure SCD.
The don stated that herbalists’ use of herbs with anti-biotic, anti-inflammatory and analgesic properties to reduce the microbial load did not result in curing the disease.
Uwakwe added, “Herbalists try to use some of the known herbs that have some analgesic and anti-inflammatory properties. When that is used to reduce the pain, that does not mean you are curing sickle cell disease. When it is used to reduce the microbial load, that does not mean you are curing the disease. You are only trying to manage the complications.
“Research has been done in this country, including research done by the Nigerian Institute of Medical Research leading to the production of remedies that can be used to inhibit the red cell and crisis that emerge. Those are still in trial and they cannot be said to be a cure to sickle cell anaemia or hemoglobinopathy.
He emphasised that the only cure known globally was stem cell transplantation.
He added, “Another approach that is still not perfected is trying to increase the level of fetal haemoglobin which is the haemoglobin of the fetus which is transformed into adult haemoglobin. If we can stabilise fetal haemoglobin for some time, it would help to ameliorate the sickening crisis.
“We can’t talk about a cure through herbal practice. I have researched several herbs and a number of them have analgesic properties, alloys and other functions or the other that can help but that does not mean they cure. To cure means that you have changed the genetic constitution from Hbcs to Hba.”
It’s heartbreaking – Advocate
“It is heartbreaking, the act is evil,” was the response of The National Director and Chief Executive Officer, Sickle Cell Foundation Nigeria, Dr Annette Akinsete, when contacted by our correspondent on the matter.
She affirmed that claims of those who claimed they had the cure did not have empirical evidence because the treatment they underwent did not involve gene manipulation.
She dared those making such claims to bring them to the centre for research to be conducted on the medicines.
She stated, “Ladies and gentlemen out there who may feel that they have a cure, I am not sure to what extent you are being altruistic with what you are doing or it is just a money-making venture.
“Some of you may believe that you have a cure, if you believe so, come to National Sickle Centre, Idi-Araba, opposite LUTH, we engage in research and encourage research into local remedies and herbs. If it turns out to be true, we will put it out there for the world to see and they can come to do business with you. Don’t stay in your corner and sell your remedies to a few people.
“On the other hand, if you know that it doesn’t work and you are doing it, what you are doing is evil. You are raising the hopes of these persons; some of them will become suicidal. We have seen several persons with sickle cell who die by suicide because they have done everything they think is within their power and they are not getting any better.
“They were promised a cure, they felt they were cured and suddenly they were not cured anymore and they died by suicide. This is blood money, please desist from it.
“The illness has to do with a lot of pain and shortage of blood, which is associated with weakness, and they are not able to carry out the tasks the average person would do. So they already have physical disadvantages but in addition to that, there is emotional, mental, social and psychological stress. Teenagers and young persons who would want to date face stigmatisation and this is a burden. On top of that, the financial challenge because they have to be on medication every day of their lives.”
She stated that the provisions in the NHIS for sickle cell treatment were not buoyant, adding that some Health Maintenance Organisations do not register persons with sickle cell because they were considered as people with pre-existing conditions and more expensive to cater for.
This had made warriors and their family members to pay-out-of pocket for treatment.
She stated that to bridge the gap of access to routine drugs, the foundation stepped in to ensure the availability of these drugs for free.
Akinsete called for free treatment of sickle cell for children under the age of five to reduce the mortality rate of children under the age of five following the Sustainable Development Goals.
She added that improved medical care and newer drugs were currently helping the warriors to live better and more productive lives.
“We have trained counsellors across the country and do a lot of advocacy on mainstream and social media to debunk the myths. Eat a balanced diet, vitamins, and supplements are good and support the immune system. But when you are told this herb can cure and your SS will change to AA, that is a lie,” she added.
Call for more research on cure
A haematologist, Prof Ibironke Akinsete, speaking recently during the World Sickle Cell Day celebration, said although several milestones in research and care had been achieved, which had helped warriors live longer and more productive lives, more research needed to be done to achieve comprehensive lives.
Akinsete decried the little attention modern comprehensive care received in Africa.
She said, “We hope with more research, a cure by Gene Therapy, which does not require transplantation, will be available. However, one area which has not received much attention in Africa is modern comprehensive care. I know this was the theme for 2017 World Sickle Cell Day. But unfortunately, this has got little attention.”
Also at the WSCD, the Director of Port Health Services, Dr Morenike Kuku, representing the Lagos State Ministry of Health’s Permanent Secretary, Olufunso Adebiyi, stated that the integration of sickle cell care and services into maternal care and child health services was a top priority.
Former Minister of Science and Technology, Olorunnimbe Mamora, in May 2023, stated that the ministry, through its agencies, had developed diagnostic processes treatment and the drugs for sickle cell and hypertension.
During the State House briefing organised by the Presidential Communications Team, he stated, “Nigeria has a very large population of sickle cell disease patients and carriers. To that effect, I can tell that we have developed products from plants that combat or are anti-sickening in nature and therefore reduce the number of attacks that usually result from sickle cell anaemia.
“I can say that through our molecular diagnostic laboratories, we have been able to develop a mode of identifying or making a diagnosis because the first step in the management of a patient is to make the right diagnosis; if you don’t make the right diagnosis, you cannot treat what you don’t know.”
