Growing up in a rural area of Uganda, Segawa Wasswa knew very early on that he was different from the other kids in his community. Wasswa was born with severe hemophilia A but he never knew it. In fact, his brother and two uncles had all died from complications related to hemophilia but none of them had even heard of the condition let alone received a diagnosis.
The situation in Uganda for people with a bleeding disorder has always been challenging, but in 2012, the Ugandan Haemophilia Foundation (UHF) joined the World Federation of Hemophilia (WFH), taking an important step to improving care in the country.
Since then, the UHF has taken steps to improve care within the country by attending several workshops, as well as a productive Twinning partnership with the Great Ormond Street Hospital from London, United Kingdom. The UHF has worked very hard towards improving diagnosis and care for people with bleeding disorders but there are still many challenges ahead for this African nation.
These challenges are perfectly illustrated by the case of young Segawa. It was not until the age of 12, after suffering a painful knee bleed in 2013 that he was brought to a rehabilitation care unit for children with bone disabilities. Doctors at this centre misdiagnosed him with a bone disease and proceeded to perform orthopedic surgery on his knee without any clotting factor concentrates. Luckily he survived the surgery but his condition only worsened.
Fearing the worst, the rehabilitation centre transferred Segawa to Mulago Hospital in Kampala, where he was tested and finally received the proper diagnosis of severe hemophilia A.
Segawa’s condition was reported to the UHF, who was able, through the WFH Humanitarian Program, to provide him with the factor concentrates he needed to survive. The only problem that remains for him and his family is getting enough money to pay to travel from his rural village to the city where the treatment is available.
The situation on the ground for people with a bleeding disorder in Uganda is less than perfect, but every day that passes it improves. With assistance from the WFH, the UHF is providing proper training to people in the field and the WFH Humanitarian Aid Program ensures that in cases like Wasswa, that there is treatment available where there was none before.
The WFH Humanitarian Aid Program channels donations of life-saving treatment products to people with bleeding disorders who need them all around the world. This program is one of the many ways in which the organization supports its vision of Treatment for All.
To learn more about the Humanitarian Aid Program click here.