Tag Archives: Spondylitis Awareness Month

Talking Ankylosing Spondylitis with Imagine Dragons’ Dan Reynolds

I don’t always interview rock stars – it’s not really my thing. But this day was different. This was personal.

It was a chilly morning, much too early for my stiff body to roll out of bed. But this was a big day – I would soon be interviewing Dan Reynolds, the lead singer of Imagine Dragons.

“This wouldn’t be happening,” I thought, “if we didn’t share a wicked diagnosis.”

In late 2015, Dan announced during a show that he lives with Ankylosing Spondylitis (AS). A year later, he partnered with Novartis Pharmaceuticals Corporation and the Spondylitis Association of America to launch This AS Life Live!, an interactive talk show for and by patients living with AS.

Before I keep going, I want to express how lonely it can be to trudge through life surviving a disease that people do not know about. I spend substantial time and energy educating friends, strangers, and even doctors about my condition, which leaves little room for receiving compassion and empathy – like the supportive gestures people usually offer to someone who has a disease in the limelight. Everyone knows cancer is bad, but AS is not a well-known disease, so for a celebrity to name it on stage is life-changing. Continue reading Talking Ankylosing Spondylitis with Imagine Dragons’ Dan Reynolds

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#Spondylitis Awareness Month

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Image by Rich Beckermeyer Makeup by Alex Cassie

On April 11th, 2013, I walked into my first appointment with a Rheumatologist and walked out with a diagnosis of Ankylosing Spondylitis and the beginning of a life of advocacy, both for myself and for so many suffering silently with this progressive, degenerative, extremely painful disease.

I was always a strong person, yet I am stronger now than I ever was before, but in ways I don’t want to be. I would much rather have the freedom to choose to be mediocre if it meant I could have my health.

We do not choose to be strong. We become strong when we choose to survive.

April is Spondylitis Awareness Month. Learn about Ankylosing Spondylitis by watching this video created by the Spondylitis Association of America.  Then share it.