By Safia Abdulrahman
For numerous Nigerian families, living with sickle cell disease means enduring persistent pain, exhausting sleepless nights, and the heavy emotional and financial toll of constant medical care.
These discomforts are shadowed by the constant fear of losing a loved one too soon.
The excruciating pain of sickle cell anaemia has claimed countless lives and left families drowning in grief and emotional trauma across Nigeria.
In recognition of the trauma associated with sickle cell, the UN designated June 19 annually as World Sickle Cell Day—a globally recognised public health initiative.
Its essential mission is to shed light on the societal impact of Sickle Cell Disease (SCD), drive research advancements, and advocate for improved clinical care and early detection procedures.
Experts define SCD as a genetic blood disorder that causes red blood cells to become abnormally shaped, blocking blood flow and leading to severe pain, infections, organ damage, and sometimes death.
According to the Centre for Policy Impact in Global Health, Nigeria remains the global epicentre of SCD.
The country records more than 150,000 babies born with the condition every year, representing over 33 per cent of the global burden.
The disease continues to cause high mortality, especially among children, with many dying before reaching adulthood due to limited access to quality healthcare and funding for treatment.
For Mrs Shiva M’ouul-Kondoun, Bursar of the University of Abuja—now Yakubu Gowon University—childhood memories are filled not with joy or laughter but with repeated tragedy.”
She recounted how sickle cell disease wiped out half of her siblings.
Born into a family of 12, she watched six of her siblings die from the disease before turning 16
“I watched my siblings lying side by side in one room, gasping for breath, while my mother stayed with them and the rest of us ran around seeking help.
“Months and years passed. One after another, without much of a gap, they died; it was a painful cycle of hope and grief,” she said.
Her voice trembled as she described the helplessness her family endured, watching young lives fade away despite desperate efforts to save them.
M’ouul-Kondoun’s story reflects the painful reality faced by so many families across Nigeria, where sickle cell disease remains one of the country’s most devastating but often neglected health conditions.
Binta Salisu also recapped her ordeal.
She still remembers the pain her son, Ismaila Salisu, suffered before he died.
He was a playful and lively child whose life gradually became overshadowed by the unbearable pain of SCD.
She said the sign started shortly after his first birthday.
“He would cry through the night holding his hands or legs as if something was biting him from inside.”
She said at first, they thought it was just a normal childhood illness.
Medical tests later confirmed that Ismaila had SCD.
From that moment, life changed completely for the family.
“It became a cycle of hospital visits, medications, and sleepless nights.’’
“He was always in pain. Sometimes he wouldn’t eat. Sometimes he would just lie there and stare at me.”
The emotional burden became unbearable for her as a mother.
“I used to pray and ask God to take my life instead and spare him because he was too young.”
She said a doctor later explained that Ismaila suffered repeated sickle cell crises, episodes of intense pain caused by blocked blood vessels, which gradually weakened his body system.
On the day he died, Salisu said her son struggled for breath.
“He held my finger so tight, like he did not want to let go, then suddenly he became still.
“He was gone forever,” she said.
Beyond the physical pain suffered by patients, families also battle financial hardship, especially when emergency medical care is needed.
Ruqqayya Abdulrahman, 27, knows this reality too well.
She narrated how she lost the man she intended to marry to sickle cell disease in 2025.
Describing him as kind, loving, and full of dreams, she said his death shattered her world.
“He was the man of my dreams.”
She said the tragedy happened after they attended his younger sister’s graduation ceremony.
Abdulrahman said her former partner started complaining of stomach pain.
“We thought it was just the usual crisis, so he took painkillers and the pain reduced briefly.
“But after some time, the pain became severe and we rushed him to the hospital.”
At the hospital, doctors reportedly recommended an urgent blood transfusion.
However, the family struggled to raise money for the blood.
“After spending so much on tests and treatment, they said he needed blood urgently, but there was no money.
“The delay in getting a blood transfusion was what led to his death on Sept. 7, 2025, a date I will never forget,” she said.
Across Nigeria, similar stories echo in homes, hospitals, and communities: stories of parents burying children, lovers losing partners, and families silently battling emotional and financial exhaustion.
Health experts say that in spite of advances in treatment, many sickle cell patients in Nigeria still lacked access to adequate care, essential drugs, and proper counselling.
They also point to poor genotype awareness, inadequate newborn screening, and weak healthcare systems as major factors worsening the burden of the disease.
However, a pharmacist at the Federal Medical Centre, Keffi, Nasarawa State, John Uwaya, points out that there is hope for people living with SCD.
He said advanced stem-cell approaches or gene-based correction of haematopoietic stem cells could functionally reduce sickle cell disease by establishing erythropoiesis that produces non-sickling haemoglobin.
“It can be curative when a compatible donor is available, but it requires rigorous compatibility testing and carries risks related to conditioning, compatibility, and procedure-related complications.
“Stem cell-based or gene therapies are emerging options described as potentially less invasive but currently technologically complex and costly.”
Uwaya said that stem cell therapy and bone marrow transplantation worked by increasing the number of healthy red blood cells in the body so that they outnumber the sickled cells.
As a result, patients experience fewer crises, less severe pain, and a better quality of life.
However, he stressed that the treatment did not necessarily mean that a person’s SS genotype completely changed to AA or AS.
While stem cell therapy and bone marrow transplantation offer hope for curing sickle cell disease, they remain out of reach for average Nigerians due to high cost.
Uwaya said that treatment could cost over N5 million, making it unaffordable for most families, particularly those already burdened by the economic challenges associated with managing the disease.
“Although some patients have benefited from grants and special intervention programmes, access to curative treatment is still limited because the technology is expensive and not widely available,” he said.
These challenges have pushed non-governmental organisations and advocacy groups to intensify efforts toward supporting patients and creating awareness.
One of them is the Crystal Shape Sickle Cell Foundation, which has continued to advocate for better healthcare access and support for persons living with SCD.
Hajia Mariam Hassan, co-founder of the foundation established in 2016, said many families were suffering silently because treatment remained expensive and inaccessible.
According to her, poor awareness, inadequate advocacy, high cost of drugs, especially hydroxyurea, and difficulty accessing safe blood continue to threaten the survival of patients.
“Many people still do not understand the seriousness of sickle cell disease until it affects their family directly,” she said.
She stressed the need for stronger government intervention, subsidised treatment, public education, and improved healthcare services for patients.
Hassan said that beyond medical treatment, there was also an urgent need for emotional and psychological support for families living with the condition.
For many of them, SCD is more than a health challenge; it is a lifelong emotional battle marked by fear, uncertainty, and painful loss.
Above all, rather than mere sympathy, families navigating Nigeria’s sickle cell crisis are demanding broader awareness, affordable treatments, accessible care, and the prospect of a better future.
