By Andrea Stevens
AFRO Staff Writer
astevens@afro.com
In Ghana newborn screening for sickle cell disease is rare, with many children going undiagnosed until painful symptoms force emergency care. The International Sickle Cell Centre (ISCC), a nonprofit in Accra, is working to change that through education, advocacy and financial support for patients in need.
“In Ghana, universal newborn screening is not readily available or accessible,” said Dr. Mary Ansong, CEO and co-founder of the ISCC. “Children are usually screened around age 4, and that’s only when they come to the clinic with a severe pain episode or complications.”
Sickle-cell disease is an inherited blood disorder caused by a gene mutation that leads to abnormal, sickle-shaped red blood cells that block blood flow and cause severe health complications. According to the World Health Organization, the disease is most common in individuals of African, Mediterranean, Middle Eastern and Indian descent, with sub-Saharan African descent, accounting for nearly 80 percent of global cases.
Douglas Aikins, a university student and patient through the ISCC, was diagnosed at 15 after years of undiagnosed pain crises that were mistaken for rheumatism.
“Anytime I had a pain crisis, I used to stay in the house, battle with it drink water,” said Aikins, adding that if a family member wasn’t around to help him apply pressure to the painful area, he just struggled his way out.
Aikins’ early care was shaped by traditional beliefs and limited medical access.
“The pastor said the pain was caused by witchcraft… it created tension in my family,” said Aikins. “My grandmother used to treat me with herbal medicine. It wasn’t until I came to stay with my mom in the city that I found out it was sickle cell.”
Spiritual interpretations are common, said Diana Dwuma-Badu, a nurse specialist of hematology in child health at the ISCC.
“There’s a lot of superstition,” she said. “People either seek help from churches or herbalists before ever seeing a doctor. We see many patients only after these efforts fail.”
“Families send sick children to prayer camps to find out the cause. We documented a real story of a girl forced to confess to witchcraft during a pain crisis. When she refused, they locked her in an uncompleted building. She passed away two days later,” said Dr. Ansong.
Dr. Ansong confirmed that the use of untested herbal remedies can make patients sicker.
“We caution them about the damage herbal medications can do to their liver and kidneys…but ultimately, it’s their right. Many only return after serious complications,” said Dr. Ansong.
Despite his challenges, Aikins eventually connected with ISCC and began receiving proper care. When he was hospitalized and could no longer afford treatment, ISCC provided 1,000 Ghanaian cedis, roughly $82 in American currency, to cover his medical bills and lab tests.
“That really helped me,” Aikins said. “I used to struggle alone. Now I know what’s happening in my body, and I get support.”
Nurse Dwuma-Badu has seen the effects of delayed diagnosis.
“I’ve seen a 15-year-old with sickle cell come in with a stroke—their first-ever visit to us. The damage is done by then, and the quality of life is drastically affected,” Dwuma-Badu said. “With late diagnosis, we lose the chance to provide life-saving interventions like penicillin prophylaxis or stroke prevention. That gap results in avoidable deaths and disabilities.”
ISCC and similar organizations are advocating for early screening and holistic care, offering both medical and emotional support to families.
“Sickle cell affects entire households,” Dr. Ansong said. “The financial strain, the social stigma, even marriages fall apart. But with awareness and early diagnosis, so much of this can be prevented.”
Dwuma-Badu states that treatment should be accessible to everyone regardless of where they live.
“No baby should be disadvantaged because of their geographical location. We need more clinics, better-trained personnel, and access to life-saving medication like hydroxyurea,” said Dwuma-Badu.
Ansong said more awareness is needed when it comes to the fight against sickle cell disease.
“Sickle cell is a neglected public health condition, even globally,” said Ansong. “We must break the stigma, drive political will and close the massive health disparities in treatment and care.”