Hometown Whitesburg, Kentucky
Involvement with HFGF: 10+ Years
Joseph Burke has been on quite a journey since being diagnosed at birth with Severe Hemophilia A forty years ago. But through it all, he remains positive, not allowing a bleeding disorder to control his life.
“It’s about turning messes into messages,” says the Clermont resident. “We are not defined by our illnesses.”
Born and raised in Whitesburg, Kentucky, Joseph is a product of a time when information on how to deal with bleeding disorders was sparse. There was little outreach. There were no camps. As a result, he lives with significant joint damage. Some days are better than others, but Joseph is on disability because it can be tough to move around at times.
“If I knew then what I know now, I wouldn’t have played sports,” he laughs, noting that one of his elbows is permanently fused. “And those book bags on my back in high school and college took their toll. A bad situation turned into a worse situation.”
From birth, Joseph’s future appeared ominous. By the time he was 2 years old, he contracted HIV. At 3, Joseph was diagnosed with Hepatitis C. A self-described survivor, he is one of an estimated 12,000 hemophiliacs who contracted HIV and/or Hepatitis C in the 1980s and early 1990s from the contaminated blood supply that rocked the bleeding disorders community—and the world. Of those infected, less than 1.8% are alive today. Coming from a long history of hemophilia in the family, Joseph had five male cousins who were also born with a bleeding disorder. Three of them have since passed away.
Disheartening as Joseph’s story seems, he has accomplished some really cool things and speaks of his life with much joy and elation despite the trials and tribulations.
After receiving his degree in computer science from the University of Kentucky, Joseph, who had developed a passion for the Blue Man Group, created a website from which users could stream Blue Man Group performances. This was before YouTube, or any type of mass streaming existed. His creation was so popular, he was attracting more traffic than the Blue Man Group website. That’s when he received a call from the group’s lawyer.
But instead of asking Joseph to cease and desist, he wanted to help him with his venture and in 2006, Joseph became a Blue Man Group employee. For four years, he toured the United States with the troupe handling social media and marketing.
In 2008, Joseph moved to Central Florida—and life got even better. He met Alexandra, a registered nurse, during a Blue Man Group charity fundraiser. A year later, they were married. And in 2014, he beat Hepatitis C thanks to a new drug called Solvaldi.
He admits, however, that when he first moved here from Kentucky, he was feeling a little lost, so he made his first contact with the Foundation.
“My parents had always been there for me, taking me to school and to the hospital, and now I was on my own,” he recalls. “Fran poured the truth back into my life when I needed it most. What she said was very real and very relevant.”
In March 2020, Joseph will serve as the Champion Chairperson for the Gator Clot Trot held annually in Gainesville.
After the Blue Man Group gig ended, Joseph turned his attention to his love of art, and now creates comic books and works as a freelance graphic designer. He also serves as the Ministry Director at Real Life Church helping others who are seemingly lost to find direction. He found his and is glad to be giving back.
“I am so happy where I am right now,” he admits. “I am thankful for the life I have had, or I wouldn’t have the life I have today.”
When you participate in events like the Gainesville Clot Trot, you are supporting the bleeding disorders community and helping people like Joseph when he needed it most. Joseph is giving back to the bleeding disorders community and you can too. Be sure to mark your calendars for March 14, 2020 for the Gator Clot Trot and celebrate March as Bleeding Disorders Awareness Month.