By Alex Ababio
ACCRA, Ghana — At the Sickle Cell Clinic of the Korle-Bu Teaching Hospital, 25-year-old Adwoa Mensah lies quietly on her hospital bed, clutching a small Bible. Her eyes are tired but filled with determination. She has just survived another sickle cell crisis — a storm that returns again and again without warning.
“It feels like a thousand shards of glass moving through your veins,” she says softly, describing the waves of pain that come when her own blood turns against her. Her red blood cells, instead of being smooth and round, twist into hard, C-shaped sickles that block blood flow and starve her body of oxygen.
“You can’t think, you can’t move,” she adds. “You just pray for it to end.”
Adwoa was born with Sickle Cell Disease (SCD) — a lifelong blood disorder passed down from parents who both carry the sickle cell gene. In Ghana, this is far from rare. Nearly 2% of all newborns — about 15,000 babies every year, according to the Ghana Health Service — are born with the condition. For many, like Adwoa, the pain is constant, but so is the will to live.
Her survival story mirrors Ghana’s long and ongoing fight against genetic diseases — a fight that has turned Sickle Cell Disease from a death sentence into a manageable condition. And it may hold the secret to solving one of the country’s biggest hidden health challenges: rare and undiagnosed genetic diseases.
A National Blueprint: The Sickle Cell Success Story
Sickle Cell Disease is caused by a genetic mutation — a small “typing error” in the DNA instructions that make hemoglobin, the protein that carries oxygen in the blood. If both parents carry the sickle cell trait, there’s a 25% chance their child will be born with the disease.
For decades, children born with SCD in Ghana faced a grim future. Many did not survive past age five. Hospitals lacked specialized care, families relied on home remedies, and stigma silenced discussion.
But over the last 15 years, Ghana has made major progress, building a system that is now saving thousands of young lives and offering a roadmap for addressing other rare diseases.
1. The Power of Newborn Screening
“The single most important breakthrough in Ghana’s battle with sickle cell has been the Newborn Screening Programme,” explains Dr. Vivian Paintsil, Senior Pediatrician and SCD expert at the Komfo Anokye Teaching Hospital (KATH) in Kumasi.
Started in 2010 with support from the Ministry of Health, the program takes a few drops of blood from a baby’s heel shortly after birth. The sample is tested to detect SCD before symptoms appear.
“Before screening, many children came to the hospital already very sick,” Dr. Paintsil says. “By age five, we were losing far too many of them. Now, we can identify them early, begin penicillin prophylaxis, give folic acid supplements, and teach parents what to do at home. It has transformed survival.”
According to a 2022 Ghana Health Service report, child deaths related to Sickle Cell Disease have dropped by more than 50% in regions like Ashanti and Greater Accra, where newborn screening is active.
Still, coverage is far from nationwide. Only a few hospitals participate due to lack of funding and trained lab staff. “If we can make this program universal, we could save thousands more lives,” Dr. Paintsil insists.
2. The Rise of Patient Advocacy
Equally important has been the rise of patient voices. The Sickle Cell Condition Advocates (SICCA), founded by parents and survivors, have become a powerful force in reshaping how Ghana views the disease.
“We moved Sickle Cell from the shadows into the light,” says Mr. James Asare, one of SICCA’s founders and father of a 14-year-old girl living with SCD. “For years, people thought it was witchcraft or a curse. We showed policymakers that it’s a medical condition that deserves national attention.”
Through radio shows, school campaigns, and hospital outreach, SICCA has helped thousands of families understand that SCD is not contagious or supernatural — it’s genetic. The group has also successfully lobbied the National Health Insurance Scheme (NHIS) to cover essential SCD medications and blood tests.
The Next Frontier: Lessons for Ghana’s Other “Orphan Diseases”
The success story of SCD offers valuable lessons for what health experts call “orphan diseases” — rare conditions that individually affect small numbers of people but collectively impact millions.
Globally, there are over 7,000 known rare diseases, and about 80% are genetic. In Africa, experts estimate that one in every 15 children may be born with some form of a rare disease, yet few ever get diagnosed.
In Ghana, cases of Cystic Fibrosis, Muscular Dystrophy, Phenylketonuria (PKU), and other inherited metabolic disorders often go undetected because there are no national screening programs or genetic testing facilities.
“Sickle Cell taught us how to build systems,” says Dr. Solomon Ofori-Acquah, Director of the West African Genetic Medicine Centre (WAGMC) at the University of Ghana. “We already have the labs, the counselors, and the protocols for Sickle Cell. The next step is to expand that infrastructure to cover other diseases that are also genetic but less known.”
WAGMC is already leading this charge, training medical geneticists, researchers, and counsellors who can interpret complex DNA data. “We are building Ghana’s human capital for the coming era of genomic medicine,” Dr. Ofori-Acquah adds.
The Innovation: Gene Therapy and Local Research
In December 2023, a scientific milestone was achieved: the U.S. Food and Drug Administration (FDA) approved the first-ever gene therapies for Sickle Cell Disease — including one based on the revolutionary CRISPR gene-editing technology.
“Gene therapy means we can fix the disease at its root, not just treat the symptoms,” explains Dr. Ofori-Acquah. “It’s like replacing a damaged page in a book with a clean, correct one.”
While this breakthrough offers global hope, the cost is staggering — over $2 million per treatment in the U.S. “This is far beyond the reach of most African countries,” Dr. Ofori-Acquah admits. “But it’s also a wake-up call. We must invest in local research and partnerships so we are not left behind.”
At WAGMC, teams are studying how to adapt gene-based technologies to Africa’s genetic diversity and disease environment. “Every experiment, every training session, brings us closer to a future where African children can benefit from these global discoveries,” he says.
The Human Cost of Inaction: A Mother’s Plea
In a small town outside Takoradi, Akosua Ampoma holds her seven-year-old son, Kweku, in her arms. His head rests against her shoulder, his body limp from another seizure. He has been tested for malaria, meningitis, epilepsy, and even Sickle Cell — but doctors still don’t know what is wrong.
“We have been to every big hospital,” she says, tears in her eyes. “They tell us, ‘It is not sickle cell,’ almost like it’s good news. But at least those parents know what their children have. For us, there is nothing. No name. No treatment. Just waiting.”
Her story is painfully common. Without a national genetic testing center or a rare disease registry, thousands of families like Akosua’s remain trapped in uncertainty. Many sell their property or turn to traditional healers, searching for answers that modern science could provide — if only the tools were available.
Her question echoes across Ghana’s health system:
“If we can build a strong system for sickle cell, why can’t we do the same for other children? Are they not also important?”
Timeless Health Lessons: What Every Family Can Learn
Experts say the journey of Sickle Cell care offers timeless lessons for all chronic and genetic illnesses:
1. Knowledge is Power: Families should seek genetic counselling before marriage or childbirth. Ghana’s growing network of genetic counsellors, especially at Korle-Bu and WAGMC, can help families understand risks and options.
2. Early Detection Saves Lives: Expanding newborn screening is the most affordable way to fight genetic diseases. Testing at birth costs less than GHS 40 (about $3) per child — a small price that can save a lifetime of suffering.
3. Holistic Care Matters: Managing SCD involves medication, hydration, nutrition, and mental health support. The same multi-layered approach is needed for other rare diseases.
4. Community is Strength: Support groups such as SICCA or the Ghana Rare Disease Alliance help families share experiences, fight stigma, and push for government action.
A Future Written in Our Genes
Back at Korle-Bu, Adwoa Mensah now volunteers as a peer counsellor, helping young patients who are newly diagnosed. She tells them that they are more than their disease — that education, faith, and support can make a difference.
“They see me, a graduate, living my life, and they know their future is not finished,” she says with a calm smile.
Ghana’s fight against Sickle Cell Disease proves that even with limited resources, knowledge, advocacy, and early action can save lives. The systems built for SCD — from newborn screening to genetic research — are the same systems that can give hope to thousands of families facing other rare diseases.
The story of sickle cell is more than a medical victory. It is a blueprint for national innovation. In the very blood of its people, Ghana holds both the challenge and the cure — a reminder that no disease is too rare, and no life too small, to deserve a name and a chance.