On October 16, 2020, during the World Federation of Hemophilia (WFH) Annual Meeting of the General Assembly, the Botswana Inherited Bleeding Disorders Association (BIBDA) was officially recognized as an associate national member organization (NMO) of the WFH. BIBDA is now one of 147 NMOs around the world.
Nelly Monametsi—president of the BIBDA—has a daughter with von Willebrand disease (VWD). She has been the driving force of the organization since its early beginnings. Monametsi explains how difficult life can be for a person with a bleeding disorder in Botswana: “It’s draining to live with this condition… It is important that everyone who is affected by a bleeding disorder—whether they are a parent or a community member—learn to help manage the condition for patients.” Monametsi also mentions the difficulty young students face. She says that being in and out of hospitals affects or delays their studies. “Sometimes the students end up failing grades,” she explains, “and it is embarrassing for them to study in the same class with younger siblings.” Young students with bleeding disorders are also frequently victims of stigmatization—including exclusion and emotional abuse—because of their bleeding disorder.
The Botswana Inherited Bleeding Disorders Association (BIBDA) is a patient organization which emerged after the dissolution of the predecessor organization, the Botswana Hemophilia Society. The association has more than 60 members, including close to 50 people with bleeding disorders. Both medical and lay representatives are part of the board. While there are two referral hospital centres in the country, the Princess Marina Hospital (PMH) in the south is the only hospital that provides essential services for people with hemophilia and other inherited bleeding disorders. This hospital is facing challenges with clotting factor stock-outs and disruptions in diagnosis and treatment.
Nelly Monametsi is eager to work with the WFH: “We wanted to become a WFH NMO so we can continue to benefit as patients and medical personnel.” She believes that the WFH can support the BIBDA team in their efforts related to governance, awareness, and outreach and identification.
The WFH is delighted to work with BIBDA to help it achieve better living conditions for the bleeding disorder community in Botswana. On behalf of the global bleeding disorders community, welcome, Botswana Inherited Bleeding Disorders Association!