WFH NETWORK

Prophylaxis improves quality of life of children in El Salvador

Research has shown that prophylaxis can have a major impact on the quality of life of people with a bleeding disorder and a very encouraging example of this can be found in El Salvador. In the country’s capital of San Salvador, the Benjamin Bloom National Children’s hospital has seen first-hand how donated factor provided for prophylaxis by the World Federation of Hemophilia’s (WFH) Humanitarian Aid Program can help children go from missing school and feeling secluded from their peers to living a normal childhood.

“We are seeing a new generation of patients with hemophilia,” said Armando Estrada, MD, referring to prophylaxis versus the past practice of using cryoprecipitate and plasma to treat acute bleeds. Today, he said, “If you put [a person with hemophilia] next to any other person, you wouldn’t notice that they have hemophilia.”

Being able to offer factor for prophylaxis instead of just for acute bleeds was made possible by the close relationship between the Benjamin Bloom National Children’s hospital and the WFH. Without regular donated factor provided by the WFH, prophylaxis simply wouldn’t be possible.

“Prophylaxis hasn’t just had an impact on the pediatric patients we see, but also on their parents or guardians,” explained Keny Garcia, MD. For example, one mother said that her family had to move to be closer to a hospital because previously, when their child suffered a bleed, they had to drive a long distance to the hospital or call an ambulance which sometimes never came. Now with prophylaxis, the family is able to live more flexible lives with less worry of acute bleeds.

Prophylaxis has also had a direct impact on mothers, with many now able to complete their studies and get jobs, where before they had to dedicate themselves to caring for their children full time. Prophylaxis has also made self-infusion more practical, and this has further helped families by allowing them to administer factor at home instead of having to go to a hospital or medical facility.

The WFH Humanitarian Aid Program has truly been able to make a difference in El Salvador. In one poignant case, a family shared the story of their child who was hit on his head and suffered severe bleeding. Doctors told the parents that he was going to die, but fortunately, WFH-donated factor was available and it saved the child’s life. Since that incident, the boy has begun receiving prophylaxis, and, like so many other children in El Salvador and around the world, the treatment has allowed him to live a more normal life.

To watch “Prophylaxis in El Salvador”, a WFH Humanitarian Aid video series, please click here.

The stories of prophylaxis in El Salvador, surgical successes in India, powerful government support initiatives in Armenia and the work being done towards accurate diagnosis in Indonesia are featured in a series of videos available at www.treatmentforall.org.