Accra: ‘The pain I feel in my legs is like something continuously sawing my leg; you won’t wish such pain even for your worst enemy,’ says Mr. Kwaku Kwarteng Yeboah, a 45-year-old sickle cell warrior and Programme Coordinator of the Sickle Cell Condition Advocates (SICCA). With a faint smile, he recounts years of pain, stigma, and survival. ‘You live like that all your life because a couple thought they were in love and could marry without checking their sickle cell status,’ he said.

According to Ghana News Agency, Kekeli, a teenager, spent 45 days at the University of Ghana Medical Centre’s intensive care unit, enduring unbearable pain unleashed on him by a sickling cell, through no fault of his. He missed out on sitting for his Basic Education Certificate Examination (BECE) this year and is fighting for his life. His father, also a sickle cell patient, married a woman with the AS genotype, resulting in their son inheriting the full-blown SS condition. The weight of caring for Kekeli is overwhelming, costing over GHS2,300 weekly on medication alone.

For Mr. Yeboah, Kekeli’s story resonates deeply. He has lived a lifelong struggle with the sickle cell condition, enduring countless hospitalisations and near-death crises. Stigma has been a constant companion, with people doubting his longevity and families refusing marriage due to his condition. However, by marrying a woman with the AA genotype, he has three healthy sons, proving informed love is possible.

Sickle cell disease, a genetic blood disorder causing red blood cells to become rigid and crescent-shaped, leads to chronic pain, anaemia, infections, and complications like stroke and kidney failure. According to the World Health Organisation (WHO), blood clots from the sickled-shaped cells can cause extreme pain and damage to bones, muscles, and organs. The disease is inherited when both parents pass on the ‘S’ gene, with a 25 percent chance of producing a child with sickle cell disease if both parents are carriers (AS).

In 2021, an estimated 7.74 million people globally lived with sickle-cell disease, with 515,000 new births, primarily in sub-Saharan Africa, which accounts for nearly 80 percent of global cases. Sickle-cell disease causes substantial under-five mortality, with 81,100 deaths in 2021. Madam Charlotte Owusu, Founder of SICCA, insists that sickle cell disease can be eliminated in Ghana if couples prioritise genotype compatibility before marriage.

Open conversations about genotype and sickle cell remain taboo in many Ghanaian communities. Many fear rejection, while others feel discussing it is ‘unromantic.’ Mr. Yeboah stresses the importance of knowing one’s genotype to save future generations from pain. Advocacy by SICCA and health partners has led to sickle cell screening for students entering senior high schools, but more needs to be done to ensure understanding and awareness.

Globally, sickle cell has been declared a major public health issue by the United Nations. In developed nations, newborn screening, vaccines, and modern therapies have drastically improved survival rates. The WHO urges countries like Ghana to integrate genetic testing, public education, and counselling into national health systems. Health advocates recommend mandatory genotype testing before marriage registration and public education campaigns across schools, media, and faith-based institutions.

For families like Kekeli’s, the battle against pain, stigma, and financial strain continues daily. Their message is clear: ‘No child should inherit pain because two people refused to ask the right questions.’ Sickle cell may be silent, but its impact is loud in hospitals, homes, and hearts across Ghana. With awareness, testing, and empathy, the silence can be broken. Saving a generation begins with knowing your sickle cell status before love says yes.