As a relatively new association, BIBDA vows to raise awareness, provide support, and advocate for those affected by this debilitating condition. Haemophilia, a genetic disorder, hampers the body’s ability to clot blood, often resulting in spontaneous bleeding, severe joint damage, internal bleeding, and even death if left untreated.
A trained nurse for haemophilia, Dorcus Ramaphaleng revealed that despite its severity, haemophilia remains underdiagnosed and misunderstood, especially in developing countries like Botswana. She explained that many Batswana are living with the condition without being aware, which prompted the establishment of BIBDA.
“Our mandate is to raise awareness, educate people, provide support, and improve access to treatment and care. “We target people with inherited bleeding disorders in Botswana,” she said. Ramaphaleng noted that in Botswana, there are currently less than 100 diagnosed cases of the disease, but believes that the numbers could be higher with increased awareness and testing. “This is a condition that can be diagnosed early, and currently, we have around 38 patients, far fewer than 100. However, these numbers don't reflect the true picture due to insufficient data,” she explained.
Ramaphaleng revealed that haemophilia is more common in boys than girls, as females are typically carriers of the disease. She emphasised that the condition is treated solely through injections of factor eight or nine, as there is no oral medication available. To address this challenge, BIBDA chairperson Nelly Monametsi emphasised the association's commitment to bridging the knowledge gap through collaborations.
“Enter BIBDA, a collaborative effort between healthcare professionals, patients, and advocates aiming to change the landscape of haemophilia care in Botswana through education campaigns, outreach programmes, and partnerships with healthcare providers to improve diagnosis rates,” Monametsi said. Despite being relatively new, Friday Phatswane of BIBDA highlighted the association's successful intervention for haemophilia patients in 2023.
“When the country faced medication shortages in 2023, we secured funding from Canada to purchase a consignment of medication. We are expecting another consignment soon,” he added. BIBDA is gearing up to commemorate World Haemophilia Day on May 10 at Molepolole Village Mall, although the global celebration falls on April 17.
