The chronic, inflammatory condition is the cause of major pain for many Americans, including Imagine Dragons' frontman Dan Reynolds
Ankylosing spondylitis is considered a common condition, affecting 2 to 3 million Americans with around 20,000 new diagnoses each year. But the chronic, inflammatory condition is still relatively unknown, a major problem for an illness that only gets worse the longer it goes undiagnosed.
For many people with the condition, like Imagine Dragons’ frontman Dan Reynolds, they were only diagnosed after years of pain — and then had never heard of ankylosing spondylitis, or AS.
“Not only did I not know what AS was, but for a lot of doctors it’s not the first thing they think of,” Reynolds tells PEOPLE.
Part of the problem, explains Dr. Suleman Bhana, fellow of American College of Rheumatology, is that AS — which typically starts with consistent back pain and stiffness — is difficult to diagnose.
“It is challenging. It has to be individualized by person,” he tells 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.”
Unlike other diseases where a simple lab test or x-ray can lead to a clear diagnosis, AS requires an in-depth conversation.
“The full history and physical exam are really 80 percent of the diagnosis — it’s very important,” Bhana says. “And then we do a variety of lab and diagnostic tests. But rheumatic diseases are challenging in that it’s not like appendicitis where you can get a CAT scan and you know within a few minutes and how to treat it. You look for levels of evidence.”
AS affects both men and women, but mostly men, and the symptoms start at a young age, under 45 years old.
“Because back pain is a symptom and a common pain complaint in general, their symptoms may begin below 45 but they may not get diagnosed until well after, which can be very problematic,” Bhana says. “We want people to get evaluated sooner and earlier by rheumatologists, because that gives them the best opportunity for better outcomes.”
And the longer people go without a diagnosis spells bigger trouble.
“The untreated disease can be very challenging,” Bhana says. “It can lead to more pain, stiffness, even fusion of some joints, like the spine. There can also be eye damage, intestinal inflammation, skin problems. It can really affect someone’s quality of life. The body doesn’t like being in chronic inflammation. Controlling the inflammation isn’t just important for the joints, it’s really important for the entire body to bring it back in balance again.”
For people who believe they could have AS, or are looking for an explanation for their joint problems, pharmaceutical company Novartis has a three-minute quiz on their website that people can take to narrow down their symptoms, and Bhana suggests going to see a rheumatologist.
RELATED VIDEO: Dan Reynolds on His Health Battle
For a newly-diagnosed patient, it can be scary to hear that they have a lifetime illness without a cure. Bhana says it’s important to “reassure patients that there’s a way out of their symptoms” with a treatment plan tailored to them.
“The treatment is really individualized depending on the person, but we take a holistic, 360-degree view of that person and focusing heavily on diet, exercise, lifestyle changes and medical management,” he says. “But there really is no pill substitute for the diet and lifestyle changes. That has the biggest impact on people’s well-being. We try to analyze their routine and what could contribute to the inflammation. Everybody’s a little bit different.”
With a revamp of their lifestyle, AS sufferers can significantly reduce their pain and inflammation, as Reynolds has been able to do with the help of his rheumatologist.
“It’s important for people to have someone guiding them through this illness, especially as now, in 2019, there’s no cure,” Bhana says. He hopes to bring greater awareness of AS to improve the diagnosis and treatment options for patients.
“There are other diseases that have much more notoriety, but with AS it can be so different for each patient,” he says. “Anything to get that out in the open, to get people aware for diagnosis and research, is vitally important.”