Changing lives in Vietnam

'He now rarely bleeds, and can walk normally'

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 Vietnam during 2020, over 1.1 million IUs of factor were provided to haemophilia treatment centres (HTCs) by the Program.

Dr Thi Mai Nguyen 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 surgery on people with a bleeding disorder. They have also been able to use factor to teach specialists at other hospitals how best to manage patients during emergency situations and operations; and how to offer patients optimal comprehensive care. An added benefit is that many patients can take 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 Dr Nguyen.

Bao is a young man with haemophilia. His grandmother is caring for both him and his brother in Hanoi because their father left, and their 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 transformed his life. He now rarely bleeds, and he can walk normally. He even goes biking and swimming like a normal child without fear of hurting himself and causing a bleed.

Dr Bach Quoc Khanh is the Director of the National Institute of Hematology and Blood Transfusion in Hanoi. His organisation 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 haemophilia patients and all the medical staff working in haemophilia care, we would like to send out warmest heartfelt thanks for the support of the WFH.”

About the WFH Humanitarian Aid Program

The WFH Humanitarian Aid Program is helping address the lack of access to care and treatment by providing much-needed support for people with inherited bleeding disorders in developing countries. By providing patients with a more predictable and sustainable flow of humanitarian aid donations, the WFH Humanitarian Aid Program makes it possible for patients to receive consistent and reliable access to treatment and care. Sobi and Sanofi Genzyme are Founding Visionary Contributors of the WFH Humanitarian Aid Program;

* Main photo: Photographer, Oleh Slobodeniuk.