More people are affected by sickle cell in Nigeria than in any other country, so why is there a stigma around it – with even restrictions on who sicklers can marry?

A night out on Toyin Oshinowo’s 21st birthday wasn’t quite the coming of age story she had hoped. Just five minutes after having sex for the first time, she found herself hauled into the back of an ambulance en route to hospital with a sickle cell crisis.

“I look at this guy at the hospital and he looks panicky and after that we never really spoke again. I probably scared him off,” Oshinowo recounts with squeaky giggles, sprawled across the couch in her bedroom.

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This was the first of Oshinowo’s many heartbreaks as a person living with sickle cell disease – an inherited red blood cell disorder that causes unusually shaped red blood cells – and can be fatal. These sickle shaped cells can stick to blood vessel walls blocking the flow of oxygen to organs, causing excruciating pain episodes like the one that landed Oshinowo in hospital on her 21st birthday. As well as causing painful episodes, known as crises, that can last up to a week or more, sufferers of sickle cell are also more vulnerable to infections and anaemia.

“[A crisis is] like you’ve got ants on your bones, they are biting you from the inside, and there are millions of them crawling and gouging out your bones,” she explains.

Oshinowo, now 37, is from Nigeria, where each year, about 150,000 babies are born with sickle cell. Roughly 1 in 40 Nigerian newborns are affected.

But despite Nigeria being home to more people with sickle cell than any other country in the world, awareness is limited and there is a lot of stigma attached to the disease.

Churches are trying to ban sickle cell marriages



This can make it difficult to find a partner. Many churches and mosques require a sickle cell test before officiating wedding ceremonies and even refuse to marry couples where both partners have the sickle cell trait, in an attempt to reduce the prevalence of sickle cell in the next generation.

But this policy in a country where majority of the population are very religious has, to some extent, legitimised discrimination against people with the condition, and added fire to myths around the disease.

Facebook Twitter Pinterest Toyin Oshinowo. Photograph: Toyin Oshinowo

Dr Annette Akinsete, national director of Nigeria’s Sickle Cell Foundation believes these kinds of policies do more harm than good. “Some churches will not marry carriers insisting that they bring their test results and what happens is that they bring falsified results. You can pay for anything in Nigeria.”



Oshinowo also finds this policy “very wrong” and believes it should be left to each couple to make an informed decision. She has personal experience of the hysteria myths around the disease can cause in others. A boyfriend once dumped her because his mother did not approve of him marrying a person with sickle cell even though he wasn’t a carrier of the gene, meaning any potential children would be unaffected.

Even if both parents have the faulty gene, there’s still only a 25% chance their child will develop the symptoms of sickle cell and pre-natal diagnosis is available. But this is still too bigger risk for some, particularly as abortions are illegal in the Nigeria.

Oshinowo would rather not be involved in a relationship with a carrier of the gene but as she has got older feels her dating options have become limited. Her last boyfriend also broke up with her because he was uncomfortable about the impact her condition was having on their relationship as it made her depressed and she was constantly hazy from the side effects of her pain medication. “I get it,” she says. “No one really wants to be saddled with dealing with pre-existing conditions, but don’t [break up with me] after two years together. It was like he was stabbing the knife in.”

‘Nobody should have to take this pain’



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Lying back in her hospital bed with IV fluids running into her right arm, and two of her kids watching cartoons on a laptop across from her, Isioma Aihie is also feeling frustrated by the unpredictability of her disease. It’s her third day in hospital and she missed the launch of her new boutique due to a sickle cell crisis.

“My mother used to downplay it all and so do I. In my mum’s words, you would get sick and you would get better,” says Aihie, describing the effect of the disease on her life.

As a sickly child, an issue with her spleen led to her diagnosis whilst in secondary school. Since then she’s just been trying to ‘get through’ each pain episode. Some stick out more than others. In a year she can have as few as two major crises and as many as six or more minor episodes. Aihie recollects that during a crisis when one of her daughters was three years old at the time, she asked if her mother was going to die at the mention of going into hospital. “There was a particular day I was in such pain and this child jumped on me. It took everything in me not to start screaming. Once she left the room I burst into tears.”

While she has been able to have children, knowing they would not have the disease as her husband is a non-carrier of the sickle cell gene, she is more understanding of the church’s stance on marrying sickle cell couples.

Facebook Twitter Pinterest Isioma Aihie. Photograph: Joci/Isioma Aihie

“Having the pain that you have during a crisis is not what you wish on anyone. Labour pains are nothing compared to this. This is pain that you are given opiates for but the pain is still there. Nobody should have to take it,” she says.

While there has been a visible rise in NGOs championing genotype testing and awareness in Nigeria, Timi Edwin, co-founder of the Crimson Bow sickle cell initiative believes that the shame associated with the disease has been a contributing factor to the rising mortality rate. According to the World Health Organisation, more than 100,000 children die from the disease before the age of five annually. “We need to reach out to the rural areas more because these are the people that really need this information and do not have the internet,” Edwin says.

Bringing better treatment options to Nigeria



Internationally, there has been progress in the treatment of sickle cell with a rise in bone marrow transplants. These procedures cure sickle cell in the patient although they will remain a carrier of the disease. “We have had about 50 kids benefit from this transplant in four years under our care,” says Akinsete, explaining how her foundation has been able to access free procedures for children in Rome, if the parents can pay for the six month hospital stay the children need in isolation following the transplant to avoid infections. This option is still out of reach for many Nigerians, but following a donation from the Lagos state government, there is hope that country will soon open its own bone marrow transplant centre where the procedure can be administered locally at a highly subsidised rate.

For sickle cell couples who want to guarantee they don’t pass on the disease to their children, they could undertake IVF with a pre-implantation genetic diagnosis test. The test allows doctors to screen embryos for sickle cell and other genetic diseases prior to implantation. However, this cutting-edge testing, if not subsidised, is expensive and only available in a handful of countries – and Nigeria is not one of them.



Sickle cell patients in Nigeria want better treatment options but they also want more understanding of the disease by healthcare professionals. “I once went to a hospital where they offered me only Paracetamol,” recalls Aihie. “When the pain itself can kill me, why you are offering me Paracetamol?”

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Akinsete agrees that doctors lack the training need to manage the disease. “I remember speaking with the Lagos association of private medical practitioners. I was prepared for them not knowing much about sickle cell but the level of ignorance was mind boggling. These are doctors that run their own hospitals. But in medical school what they are taught about sickle cell are just a few lectures in haematology.”

Oshinowo has also had her fair share of hospital nightmares – she was once asked to drink saline water as there was no IV tube available to attach it to her as a drip. Her poor experiences in Nigerian hospitals have led her to look abroad and she’s recently returned from undertakinga pain management treatment programme at St George’s hospital in the UK. She is responding well to medication but is frustrated that if she were to decline again, she’d have to either fly to another country for treatment or endure regular tedious hospital stays in Nigeria for blood transfusions.



She desperately wants the treatment of sicklers by both healthcare workers and the public to change in Nigeria. “Too often when a doctor sees you for the first time and you say sickle cell, their first reaction is that you are a drug seeker.”

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