Each day, Vaibhav Nehra walks through the streets of New Delhi, India, intent on making it to his class on time. He faces many of the same challenges as other college students: studying for final exams, completing his assignments and preparing himself for his future career. Halfway around the world, Paul Wilton, in London, Canada, is also preparing for life after college. Both of these young men are determined to succeed, but they face obstacles that their classmates do not: They have severe hemophilia A.
Nehra struggles every day to ensure he can get access to care and proper treatment. “I think my life would be really different if I did not have hemophilia,” Nehra says. “Leading a normal person’s life is something that we all dream of, because obviously nobody wants to share the kind of pain and problems that we go through.” Nehra has hopes for the hemophilia community in India and others around the world. “I hope they get access to proper comprehensive care and treatment so that they can manage their conditions better,” he says.
Wilton’s primary concern is to maintain and protect the existing level of care, even beyond his own country. “The ultimate goal for people with bleeding disorders is to find a cure,” Wilton says. “In the meantime, we need to remain vigilant about ensuring we have a high quality of life—not only where I’m from, but for everybody around the world.”
Wilton says that although having hemophilia has been difficult at times, there are some benefits. “I’ve had lots of opportunities to make new friends, to get involved in my community and work on other skills that I don’t think I would have had the chance to without hemophilia,” he says.
Education Through Podcasts
Both Wilton and Nehra’s stories are explored in the new World Federation of Hemophilia (WFH) video podcast, “Our Lives With Hemophilia: The Stories of Vaibhav and Paul.” Through the video, the two men, their families and their caregivers explain how they have dealt with hemophilia and what they expect for their future. “This video sends a positive message and shows that we are progressing toward improving care and treatment around the world,” says Alok Srivastava, MD, WFH vice president of communications and public policy. “At the same time, it demonstrates that there is still a lot of work to be done.”
The WFH has produced three video podcasts since 2009 that cover different aspects of bleeding disorders care. “Our Lives with Hemophilia,” “The Many Faces of Bleeding Disorders” and “Together We Care: A Comprehensive Approach to Bleeding Disorders” are all part of the WFH’s Achieving Treatment for All: Hemophilia and Bleeding Disorders Educational Series. The WFH launched this series, supported by funding from Baxter Healthcare, to promote global awareness about bleeding disorders and access to care around the world. Each has been launched to an international audience on the WFH’s Web site and on social media outlets such as YouTube and Facebook.