Abuja: 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.
According to News Agency of Nigeria, 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 percent 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. Her voice trembled as she described the helplessness her family endured, watching young lives fade away despite desperate efforts to save them.
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. Medical tests later confirmed that Ismaila had SCD, and from that moment, life changed completely for the family. The emotional burden became unbearable for her as a mother, as she watched her son suffer repeated sickle cell crises.
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. Despite advances in treatment, many sickle cell patients in Nigeria still lack access to adequate care, essential drugs, and proper counselling.
Health experts point to poor genotype awareness, inadequate newborn screening, and weak healthcare systems as major factors worsening the burden of the disease. However, hope lies in advanced stem-cell approaches or gene-based correction of haematopoietic stem cells, which could functionally reduce sickle cell disease. Yet, these therapies remain out of reach for average Nigerians due to high costs, often exceeding N5 million, making them unaffordable for most families.
Non-governmental organisations and advocacy groups have intensified efforts to support patients and create awareness. The Crystal Shape Sickle Cell Foundation, established in 2016, continues to advocate for better healthcare access and support for those living with SCD. Hajia Mariam Hassan, co-founder of the foundation, highlighted the urgent need for stronger government intervention, subsidised treatment, public education, and improved healthcare services for patients.
For many families, 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.