Few words can invoke fear or dread like the diagnosis of a chronic disease like ankylosing spondylitis — a particularly painful form of arthritis that affects the spine. But for Dan Reynolds, frontman of the hugely popular Grammy-winning band Imagine Dragons — and his doctor, rheumatologist Hillary Norton — this flood of emotions was the catalyst for serious action.
Together they have launched an awareness campaign for the debilitating disease (including popular YouTube videos and websites), one that shares a common message: Don’t wait — get checked out if you have unexplained persistent pain in your back that flares at night.
Dr. Norton, who herself was diagnosed with AS, told Newsmax the disease strikes at an early age: “People are generally in their 20s when they develop back pain with AS. When we develop that pain, the last thing we think of is having a chronic disease. So that contributes to delays in diagnosis.”
Reynolds was just 24 years old when he was diagnosed by a rheumatologist. “I was in my early 20s, just starting a band, when I started experiencing serious pain at night,” he told Newsmax. “I could not sleep; I would wake up with a lot of stiffness, which would last throughout the day.”
Reynolds said he tried to live with it, but when it began to affect his every movement he knew something had to be done: “It got so bad I could not perform on stage; I really had to be stiff as a board. Just standing at a microphone still left me in a lot of pain.”
It’s fortunate that he did. Early diagnosis goes a long way to managing the disease. He added the proper diagnosis was hard to come by. “I saw a lot of doctors; that went on for a couple of years, and finally saw a rheumatologist and finally got a proper diagnosis. That’s typical for people who have AS — five-plus doctors who misdiagnose you. It’s superfrustrating to live in pain for such a long time.”
Norton said such stories are indeed typical: People suffer silently and live with prolonged pain due to misdiagnosis or worse — listening to doctors who don’t believe them.
That’s why Reynolds and Norton have become passionate about their campaign. “My goal, along with Dr. Norton, is we’ve teamed up with Novartis and the Spondylitis Association of America to raise awareness, to campaign to make this disease, this invisible disease, known. So that people don’t go through the same process that I did, that Dr. Norton did — years of misdiagnosis, Reynolds said. “It has affected me very dramatically, and now I’m in a very good place. Looking back at how hard it was, the suffering, it’s not something anyone else should have to go through.”
Ankylosing spondylitis is an inflammatory disease that, over time, can cause some of the vertebrae in your spine to fuse together. The spine becomes less flexible and can result in a hunched-forward posture. Sometimes the ribs are pushed upward as a result of this posture and it can be difficult to breathe.
There seems to be a genetic factor as well, according to Norton. She and Reynolds said it runs in their families: “Four of us in my family — there are eight boys — have ankylosing spondylitis. It’s been a part of my family, and we all get together to discuss what’s worked: diet, exercise, treatment plans,” Reynolds said.
Dr. Norton agreed: “We test for the gene HLA-B27; that’s helpful in diagnosing, but everyone who has that gene does not have AS. But the proportion of people who have that gene and have AS is very high. We look at X-rays, clinical examination . . . it’s really putting the whole story together, like Dan did with his brothers. My sister has AS, so there is that genetic component. It’s common among siblings.”
The takeway? Avail yourself even if you only suspect symptoms.
“It generally starts with pain in the back, often in the low back, at night. It tends to be worse in the late night, and then the pain lessens with activity. If you’re having night pain that gets better with activity, that’s really a red flag that you should see a rheumatologist,” Norton advised.
Before he was diagnosed, Reynolds said he felt the battle was a private one. “I really wish I had the resources available to me then; for instance the website, ASLife.com, StopAS.org, places I could go to find community and education, because it’s a hidden disease. Our goal is to shed much-needed light so no one else has to go through this to get a proper diagnosis.”
Norton stressed that those who need the help just have to do the research — though their campaign has yielded great results. In fact, April was AS Awareness Month. “We’re trying to raise awareness so people won’t wait to see a rheumatologist. I went through the delay as well, despite medical training. We want people to know they’re not alone. There’s an entire community of support out there. Most people have not even heard of ankylosing spondylitis. We have a lot of work to do.”
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