On top of having an incurable and live-threatening disease, hemophiliacs in Africa suffer rejection and discrimination. The reason? Widespread ignorance. Two activists in Ghana want to change all that.
Image: picture-alliance/dpa/D. Reinhardt
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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.
Tests are expensive, which is why many people diagnosed with hemophilia skip themImage: AFP/Getty Images
"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.
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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.
Using rats to fight tuberculosis
Together with HIV, tuberculosis remains one of the world's most dangerous diseases, with poor populations in Africa and Asia especially badly affected. The NGO Apopo is using sniffer rats to help tackle the problem.
Image: Jeroen van Loon
Meet a 'hero rat'
The Belgian organization Apopo is breeding rats to help medical professionals detect tuberculosis (TB), one of Africa's most deadly diseases. Gilbert, an African Giant Pouched rat, is smelling at human sputum samples hidden in a rectangular cage in a research centre in Morogoro, Tanzania. He's one of the forty so-called 'hero rats' that Apopo has on its books.
Image: Jeroen van Loon
Training techniques
Every time Gilbert scratches both of his front paws at a sample that has already been tested positive for tuberculosis at the hospital, he gets a reward of a mix of bananas and peanuts, motivating him to continue working.
Image: Jeroen van Loon
Not just for TB
Apopo has been using rats already for many years to locate landmines in countries like Mozambique, Angola and Cambodia. In Mozambique alone the project has found and destroyed 2,587 landmines, over 1000 explosive devices and some 13,000 small arms and ammunitions.
Image: Jeroen van Loon
A worthwhile investment
The African Giant Pouched rat has a very sensitive sense of smell and is relatively calm. Training each rat takes up to nine months and costs some 6000 euros but the animals live up to eight years, are easy to keep and don’t bond to one trainer like dogs do.
Image: Jeroen van Loon
The dirty work
Apopo breeds most of the rats themselves on site. This allows the organization to start training the rats just after they have opened their eyes. Once in a while the organization accepts wild rats to help with the breeding program.
Image: Jeroen van Loon
The testing begins
A patient gives a sputum sample at the Mbagala Kuu Hospital in Dar es Salaam, Tanzania's biggest city. Tuberculosis, an infectious disease affecting the lungs, killed more than 1.3 million people worldwide in 2012 according to the World Health Organization.
Image: Jeroen van Loon
Double checking
The samples from sick patients that test negative for TB, also get sent to the Apopo facilities. Because many public clinics have outdated technology, more than half of the tuberculosis sufferers in Africa go undetected. This has dramatic results, as one untreated person with active TB can infect 10 to 15 other people per year.
Image: Jeroen van Loon
A deadly disease
Patient Savera Komba (left) was coughing, lost a lot of weight and complained of tiredness. She was tested negative for TB at the hospital. Her sputum sample, however, was sent to the Apopo research centre in Morogoro, where the rats flagged it as positive.
Image: Jeroen van Loon
Making sure
Apopo lab technicians retest samples that were tested negative at the hospital but got flagged as positive by the rats. After confirmation, the patient is informed and needs to return to the hospital to start treatment.
Image: Jeroen van Loon
Starting treatment
Savera Komba still weighs only 39 kilograms, but since she started to take the medication, she has begun to feel better and is happy again, she says. "Without the rats, maybe I would be dead now," she told DW.
Image: Jeroen van Loon
Unconfirmed technique
Using rats to detect tuberculosis isn’t yet approved by the World Health Organization. Still, 1700 undetected patients were identified by Gilbert and the other trained rats last year in Tanzania. These encouraging results have prompted Apopo to open another TB lab in Mozambique and there are plans to expand to South Africa soon too.
Image: Jeroen van Loon
Speed machine
The main advantage of Apopo's tuberculosis rats? They're fast. A rat can process as many samples in seven minutes as a lab technician can in one day. Because of this, this method could also be suitable in the future for quickly screening large samples from communities at risk of contracting tuberculosis, for instance in refugee camps or in prisons.
