Humanitarian Aid plays important role in Uganda

Many developing countries have challenges providing their bleeding disorders communities with adequate support. This is especially true of Uganda—a country that not only struggles with access to care, but also with commonly-held beliefs that don’t necessarily have any sound medical basis.

In Uganda, a widely-held idea is that many common childhood diseases are caused by baby or primary teeth colloquially known as “false teeth”. Many parents bring their sick children to traditional healers who often extract the primary teeth using unsafe methods to “cure” a condition. The result of this practice is a high infant mortality rate in the general population—and an even higher rate in the bleeding disorders community.

Helen Adongo, a resident of the Kole district in Uganda, recalls when her daughter brought her baby to a healer to have this “false tooth” removed when he was six months old. The baby bled profusely during the procedure and died. Her daughter’s second child died in a similar way. The family choose to not have the “false tooth” removed for their third child, however as he grew up any slight injury would lead to severe bleeding. That child is now otherwise healthy after being referred to Mulago Hospital to be tested for hemophilia.

Komakech Lawrence–a young man diagnosed with a bleeding disorder—recalls that before he was diagnosed, his symptoms were sometimes seen as the result of witchcraft. On one occasion when he was suffering from swelling in a joint, he was taken to a church instead of a hospital on the advice of locals. When his condition continued to deteriorate, he was finally taken to a medical facility for care. His mother continued to suspect witchcraft for a long time before eventually embracing the counsel of the medical team. Lawrence is now faring well.

Youth with hemophilia having a discussion
This mother presents her two boys with hemophilia to be infused with hemophilia drug

Agnes Kadu, a mother of two boys with bleeding disorders, had a similar experience when her relatives thought that her children were bewitched. She is concerned that there could be many children suffering in the community with parents who are simply not aware of the seriousness of their condition. “I can imagine, some parents there believing their children are bewitched.” Her advice to parents is to observe their children keenly and seek medical attention if there is a problem. “[But] if your child is discovered to have hemophilia, don’t lose hope, continue to take care of him. I am really convinced that they can grow like other children,” she advises.

There are countless other Ugandans with similar stories. In many cases, the tales are all too similar: young people with a bleeding disorder not getting the kind of care they need to grow and have normal lives. Fortunately, there is hope.

The Hemophilia Foundation of Uganda (HFU) has been working hard to identify people suffering from bleeding disorders throughout the country in order to provide them with proper treatment. In Uganda, experts estimate that there are about 3,800 people living with a bleeding disorder—but only 2% have been identified.

Agnes Kisakye, the Executive Secretary of the HFU, said that her organization has made efforts to reach out to families and patients with bleeding disorders and the community at large through local leaders and community health workers, in order to educate them on hemophilia and other bleeding disorders. This will go a long way toward reducing the stigma and discrimination that members of the community face, and will also enhance their support and sense of belonging in community. The HFU is also leading other activities, including encouraging families to engage in income generating activities to sustain themselves and better afford medical services. This is a key endeavour in Uganda, where many families lack the basic income required to travel to medical facilities, let alone afford medical treatment. According to Kisakye, “We think these small projects (mostly for women) help people in our community support each other.”

The World Federation of Hemophilia (WFH) Humanitarian Aid Program also helps Ugandans with bleeding disorders by providing them with additional support, including donated factor product. Donations are vital in a country where patients receive minimal help from the government. Kisakye hopes that the government will start playing a bigger role soon. “We expect government to come up and allocate budget for reagents and factor products, as patients depend almost entirely on donations,” she stated. Until then, the HFU and the WFH Humanitarian Aid Program will continue to collaborate to help support the Ugandan bleeding disorders community.