Coinciding with Spondyloarthritis Awareness Month, the Spondylitis Association of America (SAA) is kicking off a national awareness campaign to educate the public and medical community about the chronic disease.
About 1 in 100 people in the United States live with spondyloarthritis (SpA), the name given to a group of rheumatic diseases that mainly affect the spine and other joints, including ankylosing spondylitis (AS), juvenile spondyloarthritis, and undifferentiated spondyloarthritis.
Since 2009, the SAA has observed April as Spondyloarthritis Awareness Month as part of its efforts to draw attention to the debilitating condition, which often goes undiagnosed or misdiagnosed. The SAA estimates that nearly 54 percent of patients are undiagnosed for between seven and 10 years.
“Axial spondyloarthritis and the related conditions have very few visible clinical signs on exams and is hidden in the larger population of back pain sufferers,” David Hallegua, MD, a rheumatologist and SAA board member, said in a press release.
Every April, the SAA carries out a series of activities to raise awareness for the disease. The organization put together a toolkit that includes sample proclamations and letters of support for constituents to send to their mayors to officially recognize April as SpA Awareness Month, social media tools to help distribute key messages on the disease across different platforms, and a pledge to support and participate in awareness efforts.
This year’s campaign also features out-of-home advertisements donated by Clear Channel Advertising and “This AS Life Live!” videos hosted by Dan Reynolds, lead singer of the rock band Imagine Dragons, who publicly revealed during a concert in 2017 that he has the disease. The web series shows Reynolds meeting with different people in the AS community, including a chef, rheumatologist, yoga teacher, and even his own brother, Mac, who also has the condition.
The goal of the awareness campaign is to emphasize the necessity of timely diagnosis and support for those impacted by SpA, as well as highlighting that the disease can affect any race or gender. This includes educating the frontline medical community on recognizing symptoms and knowing when to refer patients to a rheumatologist. Additionally, the campaign aims to raise awareness on the need for additional research funding and programs that empower the community.
While no cure has been found for SpA, early detection is critical for initiating an effective treatment plan, which should include medication, exercise, physical therapy, and good posture practices to achieve the best outcomes possible and a higher quality of life.
A delay in diagnosis could lead to the fusion of the bones in the spine, neck, or hips. In severe cases where the spine has fused in a hunched or slouched position, surgery might be required to achieve posture correction.
“The staff and the Board of Directors of the SAA are working to shine a light and identify those affected with axial spondyloarthritis by supporting clinical research in early detection and effective therapy,” Hallegua said.