Arthritis Ankylosing Spondylitis Why Diagnosing Ankylosing Spondylitis Is Often Difficult or Delayed Survey Highlights Problems Associated With Ankylosing Spondylitis By Carol Eustice Carol Eustice Facebook Carol Eustice is a writer covering arthritis and chronic illness, who herself has been diagnosed with both rheumatoid arthritis and osteoarthritis. Learn about our editorial process Updated on December 18, 2020 Medically reviewed Verywell Health articles are reviewed by board-certified physicians and healthcare professionals. These medical reviewers confirm the content is thorough and accurate, reflecting the latest evidence-based research. Content is reviewed before publication and upon substantial updates. Learn more. by Anita C. Chandrasekaran, MD, MPH Medically reviewed by Anita C. Chandrasekaran, MD, MPH LinkedIn Anita Chandrasekaran, MD, MPH, is board-certified in internal medicine and rheumatology and currently works as a rheumatologist at Hartford Healthcare Medical Group in Connecticut. Learn about our Medical Expert Board Print Tetra Images/Getty Over one million people suffer from ankylosing spondylitis (AS), yet this condition is not easily diagnosed or treated. You might see multiple doctors in search of a diagnosis during your initial evaluation, and you may need long term treatment. AS is a type of inflammatory arthritis of the spine. Typically, this painful form of arthritis strikes men in their 20s. When AS progresses, the spine can become rigid or fused, making it impossible to move the neck and/or back. 1:55 What Is Ankylosing Spondylitis? Life Impact Survey The AS Life Impact Survey was conducted by Harris Interactive on behalf of the Spondylitis Association of America (SAA) with the goal of learning more about people with AS and how the disease impacts their daily lives. Harris surveyed 1,996 adults by mail and 194 online between July 3, 2002, and October 4, 2002. The survey respondents had had some contact with the SAA and stated that they had AS. The second sample group of 194 patients was physician-referred. Survey Results Results from the survey showed how difficult daily living can be for with AS: 66 percent of respondents said that AS caused them to have a forward-stooped posture. 55 percent reported that their spine had fused, at least partially. 60 percent of respondents said AS limits their ability to walk, get into a car, sleep, and/or have a satisfying sex life. 25 percent had been forced to change their job/career because of AS. 44 percent avoided certain jobs/careers due to AS, while 17 percent under age 65 said they were not working. 54 percent were not diagnosed with AS until at least five years after their first symptoms appeared. 30 percent endured symptoms for more than 10 years before being diagnosed with AS. 24 percent saw five or more health professionals as they sought a diagnosis. 62 percent said they were diagnosed by a rheumatologist. 71 percent claimed that back pain/stiffness was one of the symptoms causing them to seek treatment at first. 29 percent reported that when their AS pain was at its worst, they were unable to move and were incapacitated. 51 percent reported that their breathing had been painful or difficult at some point due to AS. Ankylosing Spondylitis Symptoms It is imperative that people with symptoms of AS heed the early warning signs and seek diagnosis and treatment. Back pain and stiffness can be minimized with proper medical management. New therapies are emerging, which help control disability and deformity associated with AS. The early warning signs of AS to be aware of are: Gradual onset of low back pain prior to age 35Morning stiffness of the spinePain and stiffness that worsens with immobilityPain and stiffness that improves with physical activitySymptoms persist for more than three months Ankylosing Spondylitis Doctor Discussion Guide Get our printable guide for your next doctor's appointment to help you ask the right questions. Download PDF Email the Guide Send to yourself or a loved one. Sign Up This Doctor Discussion Guide has been sent to {{form.email}}. There was an error. Please try again. Was this page helpful? Thanks for your feedback! Dealing with chronic inflammation? An anti-inflammatory diet can help. Our free recipe guide shows you the best foods to fight inflammation. Get yours today! Sign Up You're in! Thank you, {{form.email}}, for signing up. There was an error. Please try again. What are your concerns? Other Inaccurate Hard to Understand Submit 0 Sources Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy. Delay in Diagnosis for People With Ankylosing Spondylitis Can Lead to Permanent Spinal Damage and Poor Quality of Life.