A GNA Feature by Laudia Sawer
Tema, Oct. 09, GNA- “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.
A teenager’s battle for survival
In another vein, 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 should have sat for his Basic Education Certificate Examination (BECE) this year; he missed out on it, and instead, he is fighting for his life.
His father says, “We stayed on admission for 45 days and are now at home. Two surgeries are already done, and we spend over GH¢2,300 every week on his medication alone. The weight of caring for him is overwhelming, and we need help to care for him.”
Kekeli’s father is also a sickle cell patient. He married a woman with the AS genotype, a union that resulted in the birth of their son, who inherited the full-blown SS condition.
Now bedridden and weak, Kekeli’s story is a painful but powerful reminder of the cost of uninformed love.
A lifetime of pain and perseverance
For Mr Yeboah, the story of Kekeli, hits close to home. He too, has lived the lifelong struggle with sickle cell condition, enduring countless hospitalisations and near-death crises.
“There was one episode in Kumasi when doctors thought I wouldn’t make it,” he recalls; “Another episode three years ago, left me unable to walk for months. Since then, I can’t even wear shoes; the pain is unbearable.”
Yet, his greatest battle wasn’t only physical. “In school, people said, ‘Sickle cell people don’t live long.’ Some families refused to let me marry their daughters. The stigma hurts as much as the disease.”
By grace and sensitisation, he married a woman with the AA genotype, and together they have three healthy sons. “It’s possible,” he says. “Love can exist, but only when it’s informed.”
Sickle cell: A preventable tragedy
Sickle cell disease is a genetic blood disorder that causes red blood cells to become rigid and crescent-shaped, blocking blood flow and depriving tissues of oxygen.
It causes chronic pain, anaemia, infections, and complications that can lead to stroke, kidney failure, and early death.
According to the World Health Organisation (WHO), the blood clots that generate out of the sickled-shaped cells interconnecting can cause extreme pain in the back, chest, hands and feet, and the disrupted blood flow can also cause damage to bones, muscles and organs.
People with sickle cell disease often feel weak and tired and look pale. The whites of the eyes and skin often have a yellowish tint.
“In the region, the majority of children with the most severe form of the disease die before the age of five, usually from an infection or severe blood loss. In countries such as Cameroon, the Republic of Congo, Gabon, Ghana and Nigeria, the prevalence is between 20 per cent and 30 per cent, while in some parts of Uganda it is as high as 45 per cent,” the WHO states.
Sickle cell disease is not contagious but rather inherited when both parents pass on the “S” gene.
If two carriers (AS and AS) have a child, there is a 25 percent chance of producing a child with sickle cell disease (SS), 50 percent chance of a carrier (AS), and 25 percent chance of an unaffected child (AA).
According to the WHO, in 2021, an estimated 7.74 million people were living with sickle-cell disease globally, with 515,000 new births, primarily in sub-Saharan Africa, which accounts for nearly 80 percent of global cases.
Sickle-cell disease also causes substantial under-five mortality: 81 100 deaths in 2021.
The marriage dilemma: blinded by love
Madam Charlotte Owusu, Founder of SICCA, insists that sickle cell disease can be eliminated in Ghana if couples prioritise genotype compatibility before marriage.
“Sickle cell disease can be prevented if people with SS or AS marry partners with AA genes,” she says. “We’re not telling people not to fall in love, but love should not be blind to science.”
She explains that if the 75 percent of Ghanaians with AA genes consciously marry the two percent with SS and the 23 percent with AS traits, “we can eliminate sickle cell disease in Ghana within a generation.
“It’s not about rejection,” she adds, “it’s about responsibility. Preventing this disease is one of the greatest acts of love.”
Breaking the silence and stigma
Open conversations about genotype and sickle cell remain taboo in many Ghanaian communities. Many fear rejection, while others feel discussing it is “unromantic.”
For Mr Yeboah, stigma is one of the disease’s cruelest companions noting that in growing up, there were times people looked at him like he was cursed, stressing, however, that knowing your genotype does not define your worth but rather helps you to save a generation from pain.
He calls for genetic counselling to be made accessible through schools, churches, and community programmes.
Advocacy in action
Thanks to consistent advocacy by SICCA and health partners, sickle cell screening is now part of the medical testing for students entering senior high schools.
“This is a good start,” says Mr Yeboah, “but we must go beyond testing. Students must understand their results and what they mean for their future.”
SICCA is also collaborating with the University of Education to research how sickle cell affects students’ academic performance and social well-being.
“These partnerships are critical,” says Madam Owusu “They help us build a generation that makes informed choices.”
She has called for collaboration between advocacy groups and faith-based organisations to intensify education and awareness, initiate counselling and support, build capacity, and implement screening processes, advocacy and fundraising.
While advocacy is intensifying, access to treatment remains a struggle, Madam Owusu laments, stating that there is shortage of sickle cell clinics, genetic counsellors, and specialist doctors across Ghana.
“Prevention is key because the system cannot support the cost of treatment,” she says. “Families spend thousands of cedis each month; it’s unsustainable.”
Mr Yeboah on the other hand, echoes the sentiment: “If you ignore your genotype, your child could suffer, and your finances will suffer too.”
Global challenge, a local responsibility
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.
In sub-Saharan Africa, however, up to 80 percent of children with sickle cell disease die before age five, mostly due to preventable complications and poor access to care.
The WHO urges countries like Ghana to integrate genetic testing, public education, and counselling into national health systems.
A call for policy and personal change
Sickle cell prevention requires both policy leadership and personal action.
Health advocates recommend mandatory genotype testing before marriage registration; public education campaigns across schools, media, and faith-based institutions; the establishment of specialised sickle cell centres nationwide; and genetic counselling integration into primary healthcare systems.
Let us remember that sickle cell is lifelong and incurable; that is why awareness and prevention are the cure.
Saving a generation
For families like Kekeli’s, the battle continues daily against pain, stigma, and financial strain. Yet, their voices echo a message of hope: know better, choose better, save others from suffering.
The message is simple but profound:
“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, that silence can finally be broken.
It is important to love with awareness and live without regret. Before you fall in love, know your status. Before you say “I do,” know your genotype. Before you bring a child into the world, make sure love is informed.
“Saving a generation begins with knowing your sickle cell status before love says yes.”
GNA
Edited by Lydia Kukua Asamoah