Hemophilia community connects through creative awareness and advocacy campaign
WAUSAU, Wis. (WSAW) - April 17 is World Hemophilia Day. Jonathan Hill was born with severe hemophilia A in 1971. In the 1980s, Jonathan learned that he had been infected with hepatitis C and HIV from contaminated blood products. Later, he developed severe liver disease, undergoing a liver transplant in 2017. For several years before his transplant, Jonathan sought a creative outlet, writing about his experiences on Facebook. The response was huge. Family and friends shared how his posts helped them better identify with the struggles of people with rare diseases. Over time, he compiled his writing into a memoir, “Blood Brothers: A Memoir from the Lost Generation of Hemophiliacs.”
Not only has Jonathan been using the role-playing game “Dungeons and Dragons” his entire life as an escape from the challenges of his chronic health condition, but he has also channeled his creative energy into writing a novel. The idea came after a meeting at the National Hemophilia Foundation 2019 Bleeding Disorders Conference.
“Blood of the Paladin” details his journey of accepting, managing and embracing his bleeding disorder. In the graphic novel, he draws support from his father, close friends and the iconic fantasy role-playing game. Jonathan is sharing his story through this graphic novel in the hopes of shedding light on the challenges that people living with hemophilia face.
On Monday on NewsChannel 7 at 4, Jonathan shared more about the therapeutic process of writing and his work to help others facing similar trials. He was joined by his dear friend and former President of the National Hemophilia Foundation Val Bias, who discussed the challenges that people living with the condition face.
For more information on Hill’s novel, visit: www.BloodofthePaladin.com
From 2008 through 2019, Val, who also lives with hemophilia, led the National Hemophilia Foundation to the forefront of the healthcare reform debate on such issues as the elimination of lifetime caps and pre-existing conditions with insurers. In addition, he greatly expanded the NHF’s research agenda and created the Women’s Health and Bleeding Disorders Institute to address the growing needs for awareness and treatment for women with bleeding disorders. Before becoming CEO, Val maintained a long history with the National Hemophilia Foundation from his service as NHF’s Board Chair in 1992 to his tenure as volunteer, consultant, and lobbyist/advocate for NHF - culminating with the passage of the Ricky Ray Hemophilia Relief Act of 1998. He has interfaced with key decision makers in executive and legislative branches of federal government and has long-standing working relationships with such federal agencies as the CDC, NIH and FDA.
You can find additional resources on hemophilia at www.hemophilia.org
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