Association Talk Show Aims to Raise Awareness of Spondylitis
The lead singer of the band Imagine Dragons is hosting an interactive talk show for the Spondylitis Association of America to tell stories of people, like himself, living with the little-known autoinflammatory disease.
Among the serious diseases that have associations raising public awareness and pushing for cures, one that you may never have heard of is Ankylosing Spondylitis.
AS, an incurable autoinflammatory disease that can lead to severe pain, is common, but many people are unaware of it—and many people who have AS are misdiagnosed, said Richard Howard, associate executive director of the Spondylitis Association of America (SAA). Patients often go five to 10 years before being correctly diagnosed, and treatment they receive for other conditions may be ineffective or harmful for them, he said.
To help change that, SAA is teaming up with Novartis Pharmaceuticals Corporation to launch an interactive talk show called “This AS Life Live!” to raise awareness of AS and share stories of people living with the disease. Dan Reynolds, lead singer of the Grammy-winning band Imagine Dragons, will host the show and interview AS patients.
“This AS Life Live!” will provide “a fun way to talk candidly about how to live with the disease,” Howard said. “It’s helpful to hear other people’s stories.”
SAA reached out to Reynolds after he mentioned during a performance that he has AS, and now he has signed on to host the show and share his own experiences.
“When I started to have symptoms of AS, my band was just beginning to take off and I was newly married,” he said in a statement. “From the outside, everything was going great for me, but what many people didn’t know was that I was often in severe pain that left me unable to sleep at night or move around on stage—something that was very unlike me. Because it doesn’t exhibit any external signs or symptoms, AS truly is an invisible disease. It nearly took away many of my life’s biggest joys, like holding my child and performing live on stage.”
Reynolds has been living with AS for nearly 10 years, and he is the third member of his family to be diagnosed with it. He “is very engaging and lighthearted—he speaks well about the disease and understands it,” Howard said.
SAA’s members are people with AS and their families. The association has heard from members that, because the disease is invisible, their families sometimes don’t believe them, Howard said. For example, “you look normal but can’t raise your arms up,” he said. “When you hear someone in the public eye talk about it, it makes it more real for people.”
Reynolds will interview a different AS patient in each episode, focusing on a unique aspect of the person’s daily life, such as exercise, relationships, the workplace, and physician visits. The show will air on ThisASLife.com, an online community that provides a supportive environment for patients and offers tips on disease management, lifestyle management, and improving doctor-patient communication.
Imagine Dragons lead singer Dan Reynolds, who suffers from Ankylosing Spondylitis. (ThisASLife.com screenshot)