A Novel Experience: Living Life with Hemophilia A

Jonathan Hill has chronicled his life with hemophilia A in the pages of his new graphic novel.
Author: Kathryn Anne Stewart

Jonathan Hill’s graphic novel, Blood of the Paladin, opens with the moment he almost died. Traveling alone on business, he feels unwell, then vomits blood. He calls 911 but loses consciousness before explaining that he has hemophilia A. He isn’t wearing a medical alert bracelet or carrying travel letters. Days later, he awakens in a hospital bed, hooked up to IVs. His father, who told the medical team of Hill’s condition, is there as his son learns that his hemophilia is not as controlled as he thought.

Hill, 51, was born with severe hemophilia A. In the 1980s, he learned that he had been infected with both HIV and hepatitis C from contaminated blood products. He later developed severe liver disease, requiring a liver transplant in 2017.

The director of advancement at the University of Illinois’ Grainger College of Engineering, Hill lives in Champaign, Illinois, with his wife and two sons. He has collected his life experiences into a riveting graphic novel, sponsored by BioMarin.

How the Graphic Novel Was Born

In the three years before his liver transplant, Hill became very isolated and started writing about his experience living with hemophilia A on Facebook. “I was amazed by the response,” he says. Friends and family sent supportive messages and shared how his journey had helped them identify with the struggles of other people with chronic illnesses. “It encouraged me to keep doing that,” he says.

Over time, he compiled these writings into a memoir. Hill was soon connected with Believe Limited, a community-focused digital content and live experience agency founded by community member Patrick James Lynch and his producing partner, filmmaker Ryan Gielen.

The idea to turn Hill’s story into a graphic novel was born at a brainstorming meeting between BioMarin and Believe Limited at the 2019 Bleeding Disorders Conference. Hill was intrigued. “I had grown up reading graphic novels,” he says. “It seemed like a wonderful way to illustrate what that experience was like.” The graphic novel chronicles Hill’s life from young adolescence into adulthood as he faces various challenges related to growing up and having hemophilia.

He draws support from his father and a close circle of friends, who bond over the role-playing game Dungeons & Dragons. The game involves dice rolls and fantasy adventures, which are visually depicted in the novel. These make-believe adventures act as a foil for the real-life struggles Hill faces throughout the story.

By the novel’s end, Hill has blossomed into an outspoken advocate, both for his own medical care and on behalf of the bleeding disorders community.

What the Writing Process Revealed

Hill says writing the novel helped him process his memories and feelings. “It really started to create a narrative for me about learning to embrace my bleeding disorder and finding my voice.”

The format itself gave Hill new insights. “I had to write dialogue,” he explains. “To give each of the people in my life a voice really helped me to understand their role in my life.”

Hill hopes the bleeding disorders community doesn’t forget its legacy, especially difficult periods such as the HIV exposure.

“I hope that the community is able to remember so that we don’t allow these types of things to happen again.”

He draws inspiration from how the community transformed itself, learning to advocate for regulatory changes and for compensation for those who were affected.

“There’s not a whole lot of people from my generation of hemophiliacs left, unfortunately,” Hill says. “I think it’s important to keep telling these stories.”

To learn more, visit bloodofthepaladin.com.