People With As Genotypes Getting Married Should Be Illegal by Apostle Femi Lazarus: MP3 Download & Sermon Notes

Funmilayo Braithwaite Oyetola, an award-winning Nigerian author, global medical advocate, and founder of the Talented Young African Writers Foundation, is a banker turned storyteller who has written eleven books and now uses the power of narrative to fight one of Nigeria's most heartbreaking and preventable diseases: sickle cell anemia.

You called this book "The Audacity of Hope." Why?

When I spoke with the warriors and heard what they've gone through and are still going through, you realize it takes real courage and audacity just to live. Some of their stories are so traumatizing that I keep wondering how they are able to live through it. Some days, after interviewing a warrior, I get home and can't concentrate because it was too emotional for me. The pain, the struggles, and the fact that many of them don't have enough of a support system troubles me deeply.

You're not a doctor, not a sickle cell patient yourself, and you don't have children with sickle cell. Where did the compassion to start collecting these stories come from?

I had a strong urge about four years ago, but growing up, we had a family friend with seven children, and five of them had sickle cell disease. I watched them, year in and year out, lose one child after another, some during childbirth, some from a simple bout of malaria. The Yorubas used to call this Abiku, "the child that is born to die." People didn't know it was medical; they thought a village curse had come on the family. It took a while before I understood that these children had a genetic condition, sickle cell, and that it is something that can actually be prevented.

The Genetics, and the Danger of Gambling

In basic genetics, when you cross AS with AS, there is a twenty-five percent probability of a child with sickle cell, SS; a fifty percent probability of a child with the trait, AS; and a twenty-five percent probability of a child with neither, AA. That is what people try to gamble on. I know a woman, the mother of a well-known minister, who married AS to AS, had four children, and three came out AA with only one AS. But that is an exceptional case, almost a miracle. I also know a couple who married AS to AS and had seven children, five of whom came out SS. Nobody can plot the graph in advance. I know a couple in Ibadan who had four boys, and all four came out SS; they did not have a single AS or AA child. It is a misconception that the fifty-twenty-five-twenty-five split guarantees a mix among your children. It is purely a matter of chance, and it is not something to gamble with.

The worst combination is AS and SS, which some call outright suicide. If people who are trying to get married feel their faith makes the risk not matter, I would advise them strongly not to go ahead. Even scripture shows Jesus refusing to test God by throwing himself from the temple when tempted to do so. Why would you want to gamble the life of your own children, not your own life? Love alone is not enough reason to put children through what a sickle cell child goes through. I have seen warriors confront their parents directly and ask, "You knew all this, and you still brought us into it?" Some warriors won't even talk about their condition; they are in denial because they don't know how else to process the life they're living.

What a Crisis Actually Looks Like

One survivor described a crisis as like taking a hammer and knocking it vigorously against your nail bed, over and over. Another woman, who had three children, said that during one of her deliveries she wasn't even registering that she was in labor; the nurses asked why she wasn't reacting, not realizing that her chronic sickle cell pain had so deadened her that labor itself felt like nothing to her.

I once interviewed a warrior who had stopped growing at the age of eight. She was travelling with her parents when she went into crisis, and the hospital they were rushed to had no history of her case; the injection they gave her stunted her growth permanently. Even after two bone marrow transplants abroad, she can't grow any further, and now deals with a backlog of complications: hip replacement, leg ulcers, an enlarged liver and spleen, all from a body that has been through so much medical intervention. Her own sister, who also has sickle cell, had an easier road and remains largely unaffected after her transplant. Sickle cell is not a one-way road; two siblings with the same condition can have entirely different outcomes. That first survivor was so unused to a normal life, having spent most of it in hospitals abroad and completing university online, that she needed therapy just to reintegrate into ordinary social settings after each crisis. Waking up in the morning, they don't know if they'll be spending the next three months in a hospital bed.

The Human Cost: One Family's Story

One of the most touching accounts I collected is of a child I call Oluwadarasimi, born to a young couple deeply in love. Before their wedding, the wife told her fiance she was AS and asked his genotype. He waved it off, insisting he was fit and had no problems, and refused to get tested. The pregnancy went smoothly, but the day the baby was born, she came out jaundiced and sickly. Test results the next day showed the father was AS, the mother was AS, and the child was SS. The man could not control his emotions; he blamed the mother, and in almost every case I've documented, this is the pattern: men often just leave, not because they are wicked, but because they cannot bear to watch a child suffer. He stormed out of the hospital, telling his wife they should have tested beforehand, though she had tried to warn him and he had refused.

That child grew up in a hostile environment, unable to join her friends in races or sports; a single sack race sent her to the hospital. She decided she wanted to become a doctor to understand her own condition and help prevent it in others, and she eventually did, going on to form support groups for people living with sickle cell. She later married a man who was AA. Even though her father abandoned the family, her maternal grandfather stepped in and gave her a stable, loving home, and she was able to grow up in an almost normal situation, though she always carried the pain of knowing her father left because of her condition.

Society, Government, and the Case for Regulation

Nigeria is not yet ready with the structures that other countries have. A woman I spoke with in the UK, who needs a blood transfusion every three to six weeks, said she would never want to move back to Nigeria because the system there helps her live a normal life. In Zambia, the government approved and funded bone marrow transplants abroad for a family's two children; one child is now sickle cell free. When I raised this comparison, someone told me you cannot compare Zambia's population to Nigeria's, but my answer is that we can start somewhere: subsidize folic acid, make basic drugs affordable, do something to show that the state cares.

Employers now ask for genotype in job interviews, discriminating against people based on their blood type rather than their talent. There is little public infrastructure for people with physical challenges generally, few wheelchair-accessible entrances, little consideration for the visually impaired; it reflects a society with limited room for people facing hardship. I would recommend companies allow flexible or hybrid work arrangements rather than reject sickle cell warriors outright, and stop treating genotype as a hiring filter.

I believe it should be a penalizable offense to knowingly bring a child into the world to suffer this way, though I say that carefully, aware that in Nigeria such conversations quickly become entangled with religion. What is needed most is awareness: genotype testing should be made free and accessible in communities, in religious centers, and even attached to the marriage registration process at court, though by the time a couple is standing before a magistrate, it is often too late to change their minds. The real work has to start earlier, in youth groups and places of worship, well before people begin courting. If from around age fifteen, everyone already knew their own genotype, they could make informed choices about who not to pursue romantically.

There is also a spiritual dimension people misuse: some couples say they "heard from God" to marry despite knowing the risk, and when the sickle cell children come, the same people often walk away. In roughly eighty percent of the cases I've documented, it's the woman left carrying the burden alone, especially where finances are tight and the ongoing cost of care becomes unbearable.

Myths and Facts

1. Myth: Sickle cell anemia is contagious. It is not. Some people still refuse to hug or touch sickle cell patients as though the condition could spread.
2. Myth: Only poor people have sickle cell anemia. That was a common assumption in the past, but it is not true.
3. Myth: People with sickle cell anemia do not live long. Patients have been told for decades that they would not live past eighteen, twenty-one, or twenty-five. I know a doctor in Dubai with sickle cell who is fifty, and a woman helping others through her own foundation who is in her fifties as well. Other diseases shorten life expectancy too; there is no fixed cap on how long a sickler can live.
4. Myth: People with sickle cell anemia should not exercise. They should exercise, but they must know their own limits and stop before they push too far.
5. Myth: There is no treatment for sickle cell. For the last twenty years, management was mostly about control, but now gene therapy, bone marrow transplant, and preimplantation genetic diagnosis all exist as real treatments, even though they remain expensive and are not always fully successful.

Treatment Options and Their Cost

Bone marrow transplant is available in some countries and can run into millions of naira, sometimes hundreds of thousands of dollars abroad, and even then some patients' bodies reject the transplant, occasionally with fatal results. Gene therapy is even more expensive than bone marrow transplant, but nearly one hundred percent effective. Sickle cell itself is not a death sentence, but the treatments capable of resolving it outright remain out of reach for the average Nigerian family.

Preimplantation genetic diagnosis, PGD, lets couples going through IVF select embryos free of the sickle cell gene before implantation, essentially guaranteeing a child without the trait even when both parents carry it. Without PGD, a couple where one partner is SS and the other AS faces a fifty percent chance of a child with sickle cell anemia and a fifty percent chance of a child with the trait, with zero chance of an unaffected child, because neither parent has two normal genes to pass on.

Living Well With Sickle Cell

Warriors who learn their triggers early manage far better than those who don't; knowing your triggers solves about half the problem. Adults with sickle cell anemia should drink three to four liters of water daily, since dehydration helps sickled cells move and blocks less. They should eat well, especially fruit, rest when tired no matter how strong they feel, avoid extreme heat or cold, take medications as prescribed, and seek medical help early rather than waiting. Before travelling, they should get medical advice, take all required vaccinations, take malaria prevention medication in malaria-endemic areas, since malaria is a major trigger, and avoid dehydration and temperature extremes along the way.

Even when every rule is followed, a person can still go into crisis, sometimes triggered simply by emotional distress, which is why a future partner needs to genuinely understand what they are taking on. Support groups matter enormously; family will sympathize, but only someone who has lived through a crisis truly understands it. A doctor I know who has sickle cell herself, and who once defended a research project from a wheelchair during a crisis, said her patients relax the moment she tells them she is a sickler too, because they know she has walked the same road.

Sickle cell is not a death sentence. With known limits, consistent management, and a strong support system, a person can achieve what they set out to achieve, and can even become a source of strength to others going through the same journey.

Where can people get this book?

It has just launched and will be available through Roving Heights, Amazon, and bookshops across Abuja and internationally.

I am appealing to the federal government to look into this seriously. There are so many Nigerians living with sickle cell who need awareness and support, and I would be glad to be part of any effort to help them, because this has become my life's work.