Article Category: Community Focus
Published Online: Sep 18, 2019
Page range: s33 - s35
DOI: https://doi.org/10.17225/jhp00137
© 2019 Luke Pembroke, published by Sciendo
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.
Many people in the haemophilia community are aware of the disparity in access to healthcare and resources between developed and economically developing countries. In Uganda, for example, it is estimated that only four out of every 100 people with haemophilia are diagnosed. Access to effective treatments is severely limited, and care for people with haemophilia is available only from Mulago Hospital in the capital, Kampala. Prophylactic factor replacement is not an option, and humanitarian aid donations have allowed for on-demand factor treatment only in recent years. According to the World Federation of Hemophilia, per capita use of factor VIII in Uganda is around 350 times lower than in the UK [1]. Speaking with Peter Nangalu reveals what that treatment gap means for people living with haemophilia.
Peter is 23 years old. Despite having severe haemophilia, he is studying computer science at Kampala University. It is an impressive achievement to have got so far: many people born with haemophilia in Uganda do not survive into adulthood. The resilience and strength Peter has shown throughout his life is truly remarkable.
Problems started for Peter at age two, when he suspects an attack of malaria marked the first manifestations of haemophilia.
Peter Nangalu is 23 years old and lives with severe haemophilia A. He is currently studying computer science in Uganda’s capital, Kampala.
He was eventually able to get about again, but joint damage had left him with poor mobility and bleeds kept recurring:
These challenges made access to school even more difficult than it already was. Many families in Uganda cannot afford to pay for transport to a school, but Peter’s mother was determined that his difficulties would not stand in the way of an education.
With time, Peter felt an improvement in his mobility and started to walk again – but without a medical diagnosis confirming haemophilia and no access to treatment, this was short-lived.
After three months in bed, Peter returned to school.
Growing up with unrecognised and untreated haemophilia had a major and often traumatic impact on the first two decades of Peter’s life, and he gained a good education against the odds. He is passionate about sharing story in the hope that people will understand more about haemophilia. He is pictured here at community event organised by the Haemophilia Foundation of Uganda in Kampala
Academic success brought a new challenge. The high school was even further from home and the journey was too far for Peter to make on crutches. There was only one option.
Peter’s fellow students were now of an age where they could see he was different, and he was at risk of being stigmatised due to his physical disability. His parents, desperate to find a solution to their son’s suffering, consulted people in their village.
Peter’s family knew that he wasn’t cursed, but they still had no answers. Continuing his education was a priority; however, he was now a target for bullying.
Another severe bleed forced Peter back to bed for many more months, precipitating a very dark period when he began to doubt whether the struggle was worthwhile.
Peter did not receive a formal diagnosis of haemophilia until age 21, when he came to the attention of the Haemophilia Foundation of Uganda. He is now an active volunteer with the Foundation, frequently attending events to raise awareness about haemophilia
Those closest to Peter rallied round and helped him to carry on.
By now, Peter had seen many doctors from hospitals across the country, and at last he came to the attention of the Haemophilia Foundation of Uganda. Recognising his symptoms, they directed him to the haematology unit at Mulago Hospital. After a childhood living with repeated internal bleeds and joint damage that had made him a wheelchair user, Peter was formally diagnosed with severe haemophilia. He could now be treated with replacement clotting factor.
Factor replacement has transformed Peter’s life. He finds recalling the trauma of growing up with unrecognised and untreated haemophilia an extremely painful experience – but he is passionate about sharing his story and hopeful that others will learn from it. The strength he gained through his emotional and physical struggles has made him a powerful advocate for the haemophilia community in Uganda, volunteering his time to speak at awareness-raising events. He is now looking towards a future where he can help raise awareness about haemophilia and reduce the stigma still attached to it.