Whenever Emma Otchere speaks about her daughter, her voice carries both pride and pain.
Her daughter, Esi, was not just her child; she was her confidant, companion, and source of strength. But at 19, a severe stroke linked to sickle cell disease changed everything.
For 10 months, Esi remained in and out of Hospital, enduring excruciating pain, repeated blood transfusions, and mounting complications. Her mother rarely left her bedside.
“I lost my daughter and my best friend,” Emma tells the Ghana News Agency quietly.
The prolonged illness also cost Emma her livelihood. Once employed as an accountant, she lost her job struggling to balance work with caregiving. Today, she survives through small-scale thrift trading.
Her story reflects the hidden cost of Sickle Cell Disease (SCD) in Ghana, where thousands of families face not only the emotional burden of the condition but also devastating social and economic consequences.
Sickle cell disease is an inherited blood disorder caused by abnormal hemoglobin, the protein that carries oxygen in red blood cells. The misshapen “sickle” cells can block blood vessels, causing severe pain, organ damage, stroke, and life-threatening infections.
Data from the International Sickle Cell Centre (ISCC) show that Ghana records between 15,000 and 18,000 babies born with sickle cell disease every year, making it one of the countries with the highest disease burden globally. Yet, many children remain undiagnosed.
Ms Dinah Dwuma-Badu, a Haematology Nurse Specialist at the Korle Bu Teaching Hospital, says the number of patients seen in Hospitals represents only a fraction of the actual burden.
“Most clinicians will agree that the patients we see are just the tip of the iceberg. Many children are dying without ever being diagnosed,” she says.
She notes that research shows that without early diagnosis and treatment, between 50 and 90 per cent of children born with sickle cell disease in sub-Saharan Africa may die before their fifth birthday.
For families living in remote communities, survival often depends on where a child is born.
Mr Stephen Akomba, a Clinical Nurse at the Saboba District Hospital in the Northern Region, sees the consequences daily.
The district is characterised by scattered settlements, poor road networks, and numerous water bodies.
Some communities are more than 40 kilometres away from the nearest health facility.
Serving a population of more than 113,000 people, the district Hospital has only two doctors. To seek medical care, some patients travel by canoes across rivers before continuing by motorbike or tricycle.
“Imagine a child already in a sickle cell crisis, having to travel from the community to a riverbank, cross by canoe and then continue to a health facility before seeing a doctor,” Mr Akomba says.
He says there is currently no specialist sickle cell clinic in Saboba, coupled with limited laboratory capacity and shortages of essential medicines.
Mr Akomba states that even basic medications such as folic acid are sometimes unavailable.
“For severe cases requiring specialist care, patients must travel more than 150 kilometres to the nearest referral centre, the Tamale Teaching Hospital,” he says.
According to him, the gaps in healthcare have created opportunities for misinformation and harmful practices.
He recounts how some families turn to traditional healers who claim they can cure sickle cell disease.
One ritual involves making multiple cuts on a patient’s body with razor blades and applying herbal substances before wrapping the person in white cloth for seven days.
At the end of the period, the appearance of maggots is interpreted as evidence that the disease has left the body.
“As we speak, more than 80 per cent of the people registered in our clinic have gone through this procedure, some more than once,” he says.
In response, Mr Akomba established a community sickle cell support initiative called Powerful Survivor.
Operating with limited resources, the programme provides education, counselling, and support for more than 100 registered patients.
The initiative teaches families about triggers such as dehydration, infections, and extreme weather conditions while encouraging adherence to treatment.
Ms Dwuma-Badu says one of Ghana’s biggest missed opportunities lies in newborn screening.
She explains that the country’s first newborn screening program for sickle cell disease was introduced in 1995 at Komfo Anokye Teaching Hospital through the efforts of the late Professor Felix Konotey-Ahulu and collaborators.
For decades, access to newborn screening remained largely limited to parts of the Ashanti Region until services expanded to the Korle Bu Teaching Hospital in 2017.
The haematology nurse specialist says substantial portions of the country, particularly northern Ghana, still lack routine newborn screening services.
“If a child is born in a remote community, who is diagnosing them?” she asks.
“No child should be disadvantaged because of geographical location.”
She notes that most screening centers are concentrated in Greater Accra, leaving families in other regions without access to early diagnosis.
Ms Dwuma-Badu says children who are not diagnosed early miss critical interventions such as penicillin prophylaxis, vaccination, parental education, and routine monitoring for complications.
As a result, some develop preventable strokes before their fifth birthday.
“I have seen two-year-olds and three-year-olds who are unable to walk or are confined to wheelchairs because of strokes that could have been prevented,” she says.
Dr Enam Sefakor Bankas, a Haematologist, advocate and person living with sickle cell disease, says many adults inherit the consequences of gaps in childhood care.
“Complications such as kidney failure, chronic pain, stroke and mobility challenges often emerge later in life,” she says.
She recalls a personal experience when a routine pain crisis escalated because of delays in accessing treatment.
“Even as a healthcare professional, I found myself navigating administrative hurdles while urgently needing care,” she says.
Dr Bankas says without structured support, some patients are lost to follow-up, increasing their risk of complications.
She believes policies on sickle cell disease must become more patient-centred and account for the realities faced by both patients and caregivers.
The sickle cell advocate commends the Government’s decision to include hydroxyurea, a disease-modifying medicine proven to reduce pain crises, hospitalisations, and complications, under the National Health Insurance Scheme.
She, however, calls for wider national SCD screening for babies, improved training for healthcare workers, and better access to blood transfusion services for people living with sickle cell disease.
Ms Dinah Dwuma-Badu, a Haematology Nurse Specialist at the Korle-bu Teaching Hospital, stresses that many of these deaths and disabilities can be prevented through newborn screening, timely diagnosis, access to essential medicines and comprehensive care.
“The science exists. The evidence is clear. What remains is the collective will to ensure that every child born in Ghana, regardless of where they live, has an equal chance to survive and thrive.
As Ghana marks 31 years of newborn screening for sickle cell disease, the Haematology Nurse believes the time has come to move beyond isolated interventions towards universal newborn screening nationwide.
For thousands of children born each year with sickle cell disease, access to screening at birth could mean the difference between life and death.
By Linda Naa Deide Aryeetey
Source: GNA
