A bleeding disorder can have a huge impact on a child’s life. Bleeds can cause children to miss school, or worse: recurring joint bleeds can reduce a child’s mobility until they need crutches or a wheelchair to be mobile. In Vietnam, the World Federation of Hemophilia (WFH) Humanitarian Aid Program is changing lives by providing donated factor that is allowing children—and adults—with a bleeding disorder to go on prophylactic treatment and live normal bleed-free lives. In 2020, over 1.1 million IUs of factor were provided to hemophilia treatment centres (HTCs) by the Program.
Thi Mai Nguyen, MD, is Director of the Hematology Centre at the National Institute of Hematology and Blood Transfusion in Hanoi, Vietnam. She explains that donated factor has allowed her team to put patients on prophylaxis and perform surgeries on people with a bleeding disorder. They have also been able to use factor to teach specialists at other hospitals how to best manage patients in during emergency situations and surgeries; and how to offer patients optimal comprehensive care. An added benefit is that many patients can bring factor home and self-infuse—eliminating the need for visits to a hospital or treatment centre. “The support of the WFH Humanitarian Aid Program has helped us a lot,” says Nguyen.
The WFH has a longstanding relationship with the Vietnamese bleeding disorders community. By working with them very closely to understand their needs, the WFH Humanitarian Aid Program has been able to maximize the use of donated factor to impact as many lives as possible in the country.
- Alain Baumann, CEO of the WFH
Bao is a young man with hemophilia. His grandmother is caring for both him and his brother in Hanoi because his father left home and his mother is working outside the city. Bao has had to live with frequent bleeds in his knee since he was child. With every new bleed, his mobility was reduced, and his knee pain increased—eventually to the extent that his grandmother feared that he would have to use crutches or even a wheelchair for the rest of his life. Fortunately, donated factor from the WFH Humanitarian Aid Program made it possible for Bao to receive knee-replacement surgery. It has now been three years since the surgery and Bao can walk on his own. He’s currently studying graphic design so that he can be self-sufficient and live independently. “I didn’t think that my grandson would ever have that surgery,” says Bao’s grandmother. “Thank you all very much. This will be engraved in my heart. I will never forget what you did for us.”
Duy Anh Nguyen used to go to the National Institute of Hematology and Blood Transfusion every week for bleeds. Often, he would miss school because of bleeds and was afraid of playing for fear that he might hurt himself. Three years ago, he went on prophylaxis thanks to donated factor provided by the WFH Humanitarian Aid Program, receiving infusions twice a week. The treatment literally transformed his life. He now rarely bleeds and walks normally. He even goes biking and swimming like a normal child without fear of hurting himself and causing a bleed.
Bach Quoc Khanh, MD, PhD, is the Director of the National Institute of Hematology and Blood Transfusion in Hanoi. His organization has worked extensively with the WFH and the WFH Humanitarian Aid Program for many years, and he is greatly appreciative of the support he has received, both in terms of donated factor and in terms of education and training. “A simple thank you would not be enough to express all our gratitude for the support of the WFH and the WFH Humanitarian Aid Program,” he says. “On behalf of hemophilia patients and all the medical staff working in hemophilia care, we would like to send out warmest heartfelt thanks for the support of the WFH.”