When symptoms of Ankylosing Spondylitis (AS) are dismissed, parents live in pain. Father and musician Dan Reynolds shares his experience with this chronic autoimmune disease, and experts explain diagnosis and treatment.

The chronic autoimmune disease that dad-of-four Dan Reynolds, frontman for Imagine Dragons, suffers from is frequently overlooked. Because Ankylosing Spondylitis symptoms include fatigue, sleep disruption and back pain that starts in the late teens or 20s, many parents suffering think they’ve simply overstrained themselves while taking care of their kids.

dan reynolds and his daughter
Credit: Ari Michelson

Here's what you need to know:

Ankylosing Spondylitis Symptoms

Ankylosing Spondylitis (AS) is not a mechanical pain, like a muscle pull or sore joints, explains Dr. Hillary Norton, a rheumatologist in Santa Fe who suffered herself for years before her Ankylosing Spondylitis diagnosis. (She then took more years, she admits, to accept that AS would never magically go away.)

“AS is an inflammatory pain that lasts,” Dr. Norton says. Its hallmark is coming on at night. “We call it the ‘monster” because, during the day, other people can’t necessarily tell that you’re suffering. But many AS patients can’t lie down for a full night. They need to get up to help alleviate the pain.”

A three-minute quiz at monsterpainintheas.tumblr.com can help people with chronic back pain determine if AS is a possibility.

Ankylosing Spondylitis Causes

A malfunctioning gene is to blame. Reynolds and several of his brothers have it, as does Dr. Norton’s sister. It’s not directly passed on to children, but having a parent with AS can up the chance of getting it.

“We used to think it was more common in men, but women are just underdiagnosed,” Dr. Norton says. “Men present with pain in their lower back and spine, but women with AS may complain about pain in their hips or neck too.”

Ankylosing Spondylitis Treatment

While it can’t be cured, the good news is that AS is totally manageable with medicine and family-friendly lifestyle changes, such as staying active and eating healthy foods. Reynolds has incorporated yoga into his life, for instance, and does his best to stick to an anti-inflammatory diet and avoid trigger ingredients, which for him includes sugar. A rheumatologist can help AS patients build the individualized plan that best works for them.