Children with blood diseases in Nigeria go almost entirely undiagnosed and very few go to school. Activists say they are hoping to save lives by raising awareness of hemophilia and helping some individual children to get treatment and an education. Amir Saminu is 8-years-old and he has never been to school.
He used to think he couldn’t go because he was sickly. In actuality, he has hemophilia, a disease that prevents blood from clotting naturally so small cuts can become massive injuries with prolonged bleeding. Saminu says his father died years ago and he now lives with his uncle and five children in a village in Kaduna State in Northern Nigeria. Everyone in the village is poor, he says, and although his family knew something was wrong with him, there was no chance they could afford to pay for treatment. Megan Adediran, the president of the Haemophilia Foundation of Nigeria says Amir’s situation is typical.
“In a family with economic constraints, the healthier children tend to get more attention than those that are less healthy because parents feel, ‘Okay you are more healthy; you go to school. Let the sick ones stay back at home because we are not sure he can actually pass through school," said Adediran. Adediran says the foundation has identified more than 300 hemophilia patients, but she believes there are up to 12,000 with the clotting disorder in Nigeria. Most are undiagnosed and untreated and some are ostracized because in some communities locals believe blood disorders are caused by evil spirits.
And, she says, the problem is not going away. “Hemophilia is not a thing that is going to decrease or increase. It’s a percentage that kind of stabilizes any population," she said. Adediran says her family lost 13 boys over two generations to undiagnosed hemophilia. She says the boys bled to death after circumcision, which is an important part of the culture in northern Nigeria. Amir, however, has a chance to get treatment and go to school.
Save One Life, an American aid organization that supports children with blood diseases in developing countries, is sponsoring him, which means his family will get money for his education. Martha Hopewell is the executive director of the organization: “They also will use the money to get their children to treatment centers; to buy medical equipment that they may need," said Hopewell. "Bandages, ice painkillers, other types of supports when these children are having bleeds and other difficulties with their health.” For the vast majority of Nigerian children with blood disorders, she adds, there’s very little help available, even if they had the money.
“Families who have taken their children to the hospital only to find medical personnel also not knowing what a bleeding disorder is and therefore misdiagnosing or not knowing how to respond, in a way that causes pain for the children, often crippling or disablement because they’re not getting the appropriate treatment," said Hopewell. Many people bleed to death because they don’t know they have the disease, she adds. In helping Amir, she hopes her organization will make more people aware of the problem, especially inside Nigeria’s hospitals.