Hemophiliacs fight discrimination in Ghana

Hemophilia is a disorder that keeps the body from forming clots for instance to stop bleeding in case of injury. It is mostly inherited and never transmissible. Those who are born with this condition suffer severe pains, and risk deformity and death.

In Ghana hemophiliacs are also faced with rejection and discrimination, because most people do not understand the disease and its causes. Ignorance causes misconceptions and superstitions, which lead to even more suffering for those stricken.

Charles Afful and his colleague Alfred Osae are hemophiliacs who have taken up the fight against false beliefs. On a day in November, their van arrived in Tamale for free screening and treatment. Backed by the Ghana Haemophilia Society, the two campaigners refer to their own cases to explain about hemophilia and its effects.

A social stigma

Besides trying to inform the population, they also want to support people suffering from the condition. They know what they are talking about, because they have experienced discrimination themselves.

"Nobody is willing to accept you. People think it is a communicable disease," Charles Afful said, explaining that mothers wouldn't let their children play with hemophiliacs, for fear they might pick up the disease.

"Socialization was a problem," he told DW. "Some of us became timid, we couldn't get close to people even in the church." Their families, schools and community rejected and neglected them, he added. 

According to a report by the World Federation of Hemophilia, around 300,000 people in 113 countries were found to suffer from the disease in 2016. But as not everyone is correctly diagnosed, it is estimated that one in every ten thousand people globally could carry the genes of the condition.

Dead at four

So far in Ghana only one thousand people have been registered by the national Hemophilia Society. Its president, Martin Boakye, has a personal reason to fight the disease: his first son died of it at the age of four. "And he suffered so many complications associated with bleeding in the joints, bleeding in the muscles, lots of pain, lack of sleep," Boakye said.

According to the society, out of Ghana's population of 27 million people there are potentially two thousand seven hundred persons living with the condition. "There is no known cure for hemophilia, so parents and society ascribe a lot of its consequences to occurrences like spiritual influences." Since people don't know the cause of the incurable deformities, for example, "patients are stigmatized and for that reason they cannot interact freely in society", Bokaye added.

An expensive disease

Being a relatively rare disease, diagnosing hemophilia still presents physicians in Ghana with problems. Rafik Cosmos Yakubu, a pediatrician at Tamale Teaching Hospital, said that so far the clinic had not diagnosed a single case. "We have had children who we think have bleeding disorder, but the lab tests required to diagnose it are expensive and they are not covered by health insurance," he said. When potential disease carriers are asked to undergo tests they cannot pay, they "go and they never come back again," Yakubu told DW.

Another problem is a lack of knowledge about hemophilia among health personnel. Until such a time all the issues can be solved, Charles and Alfred together with the Ghana Hemophilia Society will not relent in their commitment to educate Ghanaians about hemophilia and thus help sufferers to lead a normal, productive life.