KANO, Nigeria — The hip pain from sickle cell disease was so intense that Sadiya Haruna, age 9, could not walk, so she rode on her sister’s back. She settled among dozens of children and mothers on a concrete bench outside a clinic here in northern Nigeria.
Her anguished mother, Mariya Haruna, sitting beside her, had already seen sickle cell squeeze the life out of three of her daughters. She was frightened that Sadiya was hurtling toward the same fate.
Sadiya’s mother was determined to ease her daughter’s bouts of agony, caused by crescent-shaped — or sickled — blood cells clogging her vessels. And she hoped the staff of the pediatric sickle cell unit at Murtala Mohammed Specialist Hospital in Kano would have answers. As a public hospital, it is the only place many families can afford to take their children to get treated for a disease that can cause severe pain, organ failure and strokes.
As Sadiya waited to be seen on a sweltering July day in 2019, families filed into the clinic. In one corner, nurses scribbled down patients’ vital information. In another, children tested their motor skills — hopping on one foot, holding out their arms. In yet another, a doctor, sitting in a torn office chair, evaluated children with bloated stomachs, flaccid limbs and labored breathing.
The clinic represents progress in battling the disease in Nigeria. Thirty years ago, a single nurse ran it. Now there is a staff of seven.
Just three years ago, nurses still used mercury thermometers and had no equipment to take basic information like a child’s blood pressure. Thanks in part to philanthropic funding and research, a better-trained staff now collects those vital signs and has equipment to detect whether a child is at high risk of suffering a stroke.
“When you compare what we offer sickle cell patients to what a lot of other hospitals offer, we have gone very far,” said Dr. Safiya Gambo, the head of pediatrics at Murtala Mohammed.
Still, there are not nearly enough doctors to provide individualized care to the roughly 18,000 pediatric sickle cell patients who are enrolled there. And the children’s fate often depends on relatively inexpensive drugs that families often struggle to afford, and screenings and treatments that can be difficult to access.
Africa is the global epicenter of sickle cell disease, a genetic blood disorder that, while relatively rare, is devastatingly familiar across the continent. In Nigeria, where research suggests sickle cell is most prevalent, roughly 150,000 children …….