Imagine Dragons Dan Reynolds Discusses Ankylosing Spondylitis Diagnosis—Five Fast Facts About AS

The lead singer of award-winning band Imagine Dragons, Dan Reynolds, previously announced his long battle with ankylosing spondylitis (AS). Now, he’s hoping to help others who may be suffering in silence.

“I went undiagnosed for so many years because this is really known as a hidden disease, meaning it’s not very well known,” the 31-year-old said in an interview with Parade.com. “It’s really not in the mainstream. And because of that, it was really frustrating for me. I got a lot of misdiagnoses over the years, from doctor to doctor to doctor. And that’s a really scary thing when nobody knows what’s going on. And many go through the same processes. So my goal really is to bring it to the mainstream.”

To do that, Reynolds has teamed up with Novartis Pharmaceuticals Corporation to launch the Monster Pain in the AS campaign. The website’s landing page opens a three-minute quiz that Reynolds hopes will give people a better understanding of whether their pain could be AS—a “life-changing” diagnosis that he spent years waiting for, he says.

“My diagnosis has been life-changing in every possible way just because I saw a rheumatologist,” Reynolds told PEOPLE. “That’s why those three minutes of taking the quiz are so important.”

Reynolds is not alone in the diagnosis difficulty, experts note.

“It is challenging. It has to be individualized by person,” Suleman Bhana, MD, a rheumatologist and fellow of American College of Rheumatology, told PEOPLE. “We go through their medical history and a physical examination to discover the origin of their back pain—when it started, how it started and their relationship to their symptoms of inflammation. When they wake up in the morning, is their stiffness lasting 45 minutes or longer? Are there other types of arthritic disease like swelling of the joints—that could be a clue. And we check for any systemic symptoms—eye symptoms, bowel symptoms, skin symptoms—that may be connected.”

Because information and diagnosis can be tough to attain, the Monster Pain in the AS website also provides resources for more information about the disease.

Here are five facts to know about ankylosing spondylitis.

  1. Ankylosing spondylitis is a type of arthritis that, according to the Spondylitis Association of America, generally impacts the spine, but is not limited to this area. Joint inflammation could result in severe, chronic pain. Inflammation, stiffness, and pain could also spread to the shoulders, ribs, hips, heels, and hand/feet joints. In less common cases, the eyes and—even more rarely—the lungs and heart could become involved.
  2. It can strike at any age, but most often presents itself during late adolescence or early adulthood.
  3. Men and women may present differently, and the disease may be more difficult to diagnose in women.
  4. According to Monster Pain in the AS, about 2.7 million Americans have the disease—but since it remains so underdiagnosed, that number could be much higher.
  5. While there is no cure, there are a number of treatment options, including medication, exercise, hot/cold therapy, and—in extreme cases—surgery.